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Kellehbeans I was given a suppository for the hemroids and boy they work! I don't have fissures though but a girl I work with does and they gave her a compound cream to use inside. She did tell me it hurt bad to put it in but I think once it starts to heal it will be better. Hope you get some relief.
 
So sorry Camilynn, I've had similar encounters with doctors. What does he mean "undetermined ulcers"? Undetermined how??

"Your labs are fine so you have IBS" is pretty much the exact response I've gotten from my GI. Except, I'm anemic and have bleeding and stuff so my labs obviously aren't really "fine". UGH! DOCTORS!
 
@Camilynn - SURELY they wouldn't give you Pentasa for IBS? The fact he said he wants you to take them and see what they do just goes to show he doesn't know what it is either. Urgh. Doctors.

I'm not sure my case is that easy [emoji53] they keep giving me ointments because I have internal and external haemorrhoids and fissures. I must admit, if this HC ointment is meant to work in days, I've got *worse*. I had the worst BM of my life. Must have had some kind of impaction. Strained, then WOAH. My fissures have all become worse, the inflammation... And I'm pretty sure I have more. Probably wasn't a good idea for me to strain but I knew something was stuck. :( it's gone now, but that's not the point. Feel like a bit of an idiot right now. Not to mention in pain.
 
Izzie that was my thought exactly! I have no idea what undetermined ulcers are but I have them for some reason as well as inflammation.

I hate the GI drs I go to! Dr doesn't even want to see me for a follow up. I was literally told to come back if I need them. Nevermind the gazillion pills you have put me on!

So what are you thoughts on the pentasa? I'm really ticked that I had to pay a lot of money for meds I may not need. I'm just concerned why the dr that did my scopes put me on it that day because he "suspects crohn" and now this dr says ibs and just see what meds do?? Doesn't make any sense to me. One thought is was serious and the other oh you are perfectly fine. Which btw I don't run to the bathroom I just go a lot. I haven't found any food triggers yet but I also am scared to eat. So I just don't feel it's ibs but then again the bentyl seems to be working.
 
Question for you all: can a GP diagnose GERD? Because I so clearly have it (belching, burning sensation, lose my voice, chest pains - it all gets worse when I eat typical GERD trigger foods) yet my idiotic GI insists I'm only having "phantom pain" from IBS.

He just won't listen to me and I don't have access to another specialist right now :/

ETA: What started off as a lot of belching earlier this evening has now escalated into near constant dry-heaving. Ickk. I feel so gross.
 
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@Izzie - I would suspect a good GP could diagnose GERD - especially if you respond to a PPI trial (like omeprazole). If you don't have a response it maybe harder to get a solid diagnosis. Mine was diagnosed by my GI after a endoscopy showed damage.

What is it about GIs not listening - mine is a bit like that some days!! other days he can be really great. My last appointment was you have IBS!!!
 
@Izzie - I think a endoscopy would confirm GERD more than anything. A GP can go by your symptoms and say, but you need endoscopy to see the damage and give a definite confirmation. No such thing as phantom pain from IBS, especially in the upper region.

I feel lucky I got diagnosed with a virus and not IBS for the first time in my life. :lol:
 
The thing is I've had scopes and they didn't show anything. Or rather one doctor who did the scope told me despite not seeing any damage that I still probably have GERD. And then forgot to put that detail in the chart and now no one else will listen to me. I got like a huge stack of papers with info about GERD and hiatus hernias and now when I see my GI he's like "oh well everyone has a hernia it's nothing".

I just don't see why PPIs help me so much then, you know? And why I have literally like every symptom of GERD.

I feel like my new part-time job is calling and nagging doctors :p
 
Izzie said:
The thing is I've had scopes and they didn't show anything. Or rather one doctor who did the scope told me despite not seeing any damage that I still probably have GERD. And then forgot to put that detail in the chart and now no one else will listen to me. I got like a huge stack of papers with info about GERD and hiatus hernias and now when I see my GI he's like "oh well everyone has a hernia it's nothing".

I just don't see why PPIs help me so much then, you know? And why I have literally like every symptom of GERD.

I feel like my new part-time job is calling and nagging doctors :p
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That's a lie, completely. Hiatus hernia can be bad. My Grandma has one, and her gullet is so wide, they couldn't operate because it is too close to her heart.

I wish PPI's helped me. :ybatty:
 
They don't help enough is the problen :p

But yeah, the doctor who actually diagnosed me was super helpful but then it's like running into a complete wall because the actual GI specialist thinks his colleague was just... wrong, or something :p
 
Izzie said:
They don't help enough is the problen :p

But yeah, the doctor who actually diagnosed me was super helpful but then it's like running into a complete wall because the actual GI specialist thinks his colleague was just... wrong, or something :p
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Ah! The non-agree-ers! Not fun.

Argh, still so sore. Hate this. Has to be proctitis or I have some hefty amount of fissures internally.
 
Camilynn, it sounds like you need a new doctor! He sounds awful and obviously is clueless as to what is going on with you if he even disagrees that you're having diarrhea! (!!!) Is it your GI? If so, can you go to your GP and ask for an urgent referral to a new GI? (Is your GP a good doctor at least?)

Izzie, yes, a GP can diagnose GERD. My GP initially diagnosed me based on my symptoms (and he put me on omeprazole), my hiatal hernia was confirmed with an upper endoscopy, and the severity of my GERD was confirmed with the pH Impedance test (the one where I had to have an NG tube in for 24 hours - not fun, but very informative). As for hiatal hernias - my GI says mine is "small and sliding", meaning it's probably not the main or only culprit in my GERD symptoms being so severe. To his credit, he just said that means we don't really know why my GERD is so bad, since a hernia like mine should not be causing me the level of symptoms that I have. (I love it when a doctor is actually honest and humble and says they don't know, rather than make something up to explain it away!).

Kelleh, I believe you mentioned going into the hospital on Tuesday to get the hemmies & fissures situation looked at? It sounds like that situation has gotten worse though - I don't suppose you can go in and be seen sooner (like to the emergency room or an urgent care clinic?). Hang in there if you do wait until Tuesday - I hope the time goes by quickly! Do something fun to distract yourself, even if you just watch a favorite movie or something like that. When I need to distract myself, I watch favorite movies/TV shows and crochet at the same time. I get bored and fidgety just watching TV, it's like I physically need to be doing something too. So lately I've been crocheting scarves and watching Death Note. :p (It's my first anime that I've ever watched, and so far it's really good!) That has definitely kept my attention and helped to keep me distracted from whatever weird thing my stomach is doing.

Speaking of my stomach - I don't want to jinx it, but I've actually spontaneously been feeling better the past couple of days. Wednesday was rough, lots of d and cramping, but after that things seemed to calm down significantly, so yesterday and today have been pretty good. Joints feel better, I have more energy, guts are doing pretty well (no cramping, one small episode of d last night but otherwise I've had formed stools!). Pretty crazy, I never know what to expect from my body, but it's like feeling well is the most unexpected thing of all. :p I even ate pizza last night and the only punishment I got from my body was a bit of reflux! Seriously! I don't know how long this will last, but it's sure nice to feel well for a few days.
 
@Cat-a-Tonic Considering asking for a pH test. Is it difficult?

And yeah one of the tough things about this so far for me has been just not being able to anticipate how I'll feel on a given day. The good days are a nice surprise though, lets hope it lasts for you :)
 
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Izzie - I'm glad the other's have advice on GERD, because I'm no help there :p

Kelleh - those all sound so very painful, I'm with Cat in wondering if you can go in any earlier?

Camilynn - it stinks that your dr's don't agree! That is so frustrating! I don't know what I'd do in your shoes.

Now I've got my own dr whine. I was in ED a week ago for LUQ and RLQ pains. I always worry about upper pains because I have a clotting disorder and a past DVT, so pulmonary embolism is a threat (although I am on a blood thinner). The good news was no diverticulitis and no PE last week, but they did note that my spleen was on the upper edge of "normal" at 12cm. That seems big to me, because I'm pretty little (5ft 1in) but what do I know? Anyway, the LUQ pain hasn't resolved, gets worse with a deep breath and last night got worse, so off to my GP I went today. She barely feels my belly, and then tells me I have musculo-skeletal pain between/around the ribs, to take tylenol and use heat. I ask about spleen, and she says the imaging from the ED showed it was "fine" nothing to be concerned about (I think she thinks I'm seriously having health anxiety issues at this point) and I should just watch for worsening pain, blood in urine, etc, otherwise just be patient and I'll likely feel better soon.
 
@Wildmtnhoney I have LUQ pain too and have had since my problems started and I did have one doctor in the beginning who tried to tell me it was my ribs. And I've gotten the health anxiety thing from SO many doctors too. You can just tell in how they speak to you that they're trying to placate you and think you're full of it. *sigh*
 
Izzie, I'm not sure what your question means exactly. Do you mean, is it difficult to get a doctor to approve that test? Or do you mean, is it a difficult test to go through?

If you were asking the first question - for me, no, it wasn't difficult at all. I had been experiencing worsening GERD symptoms in spite of being on rather high doses of medication, so I went to my GI complaining of that. It was his idea to do the pH impedance test, to get a good baseline of how bad my GERD actually was, so that he could have a better idea of how to treat it. So I didn't even have to ask for that test, it was my GI's idea! I honestly don't know how difficult it is to get the test if you're the one asking for it.

As for actually having the test - I won't lie, it wasn't fun. They had to put in an NG tube which can be quite uncomfortable - inserting the tube, it goes into your nose, through your sinuses, and down the back of your throat down into your stomach. It's not fun inserting the tube! And it's uncomfortable and disconcerting to have it in - your body keeps signaling to you that there's a foreign object in your sinuses and your throat, it's not something you can ignore or forget about easily. And then they instruct you to eat all your reflux trigger foods as they would like the test to reflect your worst GERD symptoms (you can still take your reflux meds, thank goodness). Eating with the NG tube in was extremely difficult - every time I swallowed, the tube would try to go further down my throat and just sort of pull at my sinuses and my nose. It got to the point that I was crying a little bit every time I'd have to swallow! Definitely not fun at all. I also had to sleep with it in, and it was very difficult finding a comfortable sleeping position with an NG tube in. It was a pretty miserable 24 hours. My nose, sinuses, and throat were all really sore during and after the test.

Another really awful thing, but I think this is specific to me. I broke my nose when I was a kid and it never healed right, so my nose is crooked and my sinuses are kind of messed up now. My right nostril is larger than the left, so when the nurse asked which nostril she should put the NG tube in, I suggested the right side. Um, nope. Apparently some part of my... skull? Sinus? Nose bone? is blocking the path that the tube would go in. The nurse was literally repeatedly trying to jam the stupid NG tube into me and I had tears running down my face, it hurt so much. Seriously, the nurse was using a lot of force, it was just painful! After multiple tries, she finally tried putting the tube in my left nostril instead, and fortunately it went in right away. So, if you've ever had a broken nose or anything like that, when you have the NG tube put in - ask the nurse to be very gentle with you! Because possibly the least fun thing ever is to have someone repeatedly try to forcefully jam something into your sinuses.
 
The reason it concerns me I think is because I have an AWFUL gag reflex. Just absolutely horrendous, I can't stand it when doctors use one of those wood stick things to examine my throat, even. It's one of my big anxiety triggers, I used to make the hugest fuss over having to have my throat checked as a kid. It took hours. I wouldn't even let anyone do a strep test, my mother had to do it with all the actual medical staff out of the room or I refused haha.

I also have a notoriously sensitive nose - I get the worst nosebleeds ever if someone so much as nudges it. So, yeah. It'd be an interesting time I'm sure :p

I think it'd be good though. I feel like the GERD is the thing that really bugs me the most at the moment. If it even is that, but I don't see what else it could be when I have every freaking symptom.

Honestly if it wasn't for the LUQ pain, the changed bowel habits and the bleeding that no one can seem to find the cause of - I'd think it was just GERD.
 
Izzie, that's actually the one thing that wasn't awful about the test - I have an awful gag reflex too, but the NG tube didn't really hit my gag reflex at all. Once she managed to get the stupid thing through my sinuses, it just sort of slid in without causing any further issues. So I wouldn't worry too much about that part. :)

As for the nosebleeds, I think you'd be okay there as well? It only really touches the bottom inside part of your nostril, it wouldn't irritate the parts of the nose that most tend to bleed, I think? With my weird sinuses and allergies, I am somewhat prone to nosebleeds myself (not quite as bad as you are from the sounds of it) and while things were definitely irritated at the bottom of my nostril, I don't recall any bleeding at all.
 
That sounds promising then. I'm going to ask about it. I've built up some good rage over the past few days of feeilng not so great, so now I have the energy to nag doctors once again.

Have any of you ever encountered unsolicited advice and opinions about your illness? My mother, bless her heart, loves to tell everyone about my problems. I think she worries and wants support. In any case, I sometimes meet people who know aaaaall about my medical issues despite me having never told them. Today a friend of the family told me that I could "bleed to death at any time and not even feel it" because of the aforementioned undiagnosed bleeding. I was like ugh, thanks for stressing me out. Others have given me the typical "try yoga it helped me so much when I had IBS for a week" and "you should go on this and that diet, it cures anything".

I never know how to respond. It annoys me and stresses me out but I get that they probably mean well...
 
@Wildmtnhoney - no earlier unfortunately, such long waiting times for my area. :(

@Cat-a-tonic - nope, just to another GP for a second opinion. I'm still sore with the HC ointment, it hurts for the nozzle. :( my stomach is being kinda crappy too which sucks because I'm at my boyfriends house and he has a gig tonight. :( I used to love anime.. My favourite was DNAngel - it was just too damn cute, haha! Death Note is good too - I used to love the manga of it!
 
I keep getting so damn sick at night. Nausea, pain, burping, stomach feeling like a rock, the whole deal. Hasn't been this bad in over a month :/
 
Have you been taking your Omeprazole? I don't think you're meant to take indigestion remedies with it, however fluid antacid may be your friend when you're feeling that bad
 
Been taking it, but I think the culprit here could be that my hours changed overnight a week ago. Sort of shifted the schedule a little bit. Which apparently I can't do :p

I'm gonna go to my GP on monday just to make sure my anemia isn't getting worse, I feel cold and tired like constantly.

Honestly I haven't found fluid antacid here? I'm not sure it's a thing, but I'll have to ask around. I do take regular OTC antacid tablets when it gets this bad but they seem to have limited effect.

My anxiety always spikes when I get worse suddenly. When I feel like I'm in control of things, I don't really get anxious about it at all. But then this. I need to be on my doctors more, I think, I get a little complacent when I'm feeling okay and then I just don't want to deal with it. When really, it's when I have the energy that I should deal with it ^^

Hope you're doing well!
 
Very quick summary:

- 20 yr old

- have had chronic anal pain for 6 years

- been to many many doctors and had first been told there was no evidence of anything on my rectum. the next doctor said it was a hemorrhoid (telling me to eat more fiber and drink more water). the next, a thrombosed hemorrhoid. even one doctor said it was an inflamed varicose vein. then I went to see another doctor when the pain did not go away after years and years of this, and I was told it was an anal fissure. I then had the botox injection to heal the fissure (during which the doctor found 4) and because the area was numbed for days afterwards, I could not feel how hard I was straining to go to the bathroom and I developed a new hemorrhoid.

Today I am certain that same hemorrhoid turned into a skin tag which I have had for months now. The same doctor who performed the botox injection suggested I could have crohns because of all the fissures I had before. I did some research and think I could have perianal crohns. Most of my symptoms match up. I also have had very bad heartburn for years as well as constipation which I wonder could be a symptom as well. I take stool softeners everyday and have tried everything, (I am gluten-free and vegan for years) but still every time I go to the bathroom I am in excruciating pain.

I spend my summer in Colorado in the mountains and I think the altitude makes the pain worse. I recently ended up in the emergency room (my second visit just for fissure/hemorrhoid pain) because the pain after going to the bathroom was just too bad. They gave me a prescription for the pain killer norco to take after I go to the bathroom because the pain is too horrendous. That helps but constipates you which is even worse for fissures/hemorrhoids/skin tags. I do not know what to do, after I go I cannot move for hours, the pain lasts for as long as 14 hours.

I have tried everything, and have had chronic pain for 6 years now and just want to figure out a diagnoses. Every doctor has told me something different, I know crohns is difficult to diagnose, but I feel like this could be it.

Can anyone help me figure out what this is and if it does indeed sound like perianal crohns? I cant take it anymore


Thank you!!!
 
Sooo because I suddenly have really bad/sharp pains (physically cannot stand right now) I'm heading to the hospital in my new city for an emergency appointment. Cautiously hopeful that they'll be less shitty than my old hospital. But also so annoyed at myself for getting this sick. An odd way to feel, I know, but I had to ask a family member to take me and it's taking time out of their weekend and I feel guilty and like I should be able to "tough it out"
 
@pomegranite14 - Welcome to the support group! I am 22 and I have chronic anal pain too. Fibre and water does not help my case either, and don't even mention laxatives! It causes massive abdominal pain. I honestly don't have a clue whether it sounds like perianal Crohn's, as I have never looked into the symptoms! I actually don't think I can relate to anybody more than you. Do you have bleeding and have you had any blood tests or stool tests? I have heartburn etc. too, precisely at this moment too.

@Izzie - It's just oral suspension. Gavison make it and most good pharmacies will have their own make too. I can't take it because of the Omeprazole, but I am crying out for it today because I feel so sick.

Are you okay? Have you seen the doctor now? You don't have the to tough it out, you need family and I am sure they will understand.
 
Did see a doctor. And wow. Lets just say that the difference between these hospitals both in terms of everyone's attitude and how it looks (it's so MODERN!) is just night and day.

Finally, FINALLY, someone was like "it's absolutely not IBS, that's not the case here, we need to find the actual cause of this and not just throw meds at you without knowing what's up".

No one mentioned stress or any past mental health stuff at ALL.

Now it was just an emergency appointment so I got pain meds and they did bloodwork. Which was not great but not much worse than the last time. Will get a new proper appointment with a GI specialist there in a while, so. Now I don't have to argue with my old hospital about transfers, I'm already in at the new one.

The doctor I did see was basically under the assumption that they've missed something at my old hospital. So I might have to go through some of it again. Definitely another upper scope, maybe a pH test. Lots of "fun" in my future.

One odd thing is I suddenly have pretty high blood pressure. Not sure why.
 
@Izzie - That's amazing to hear. I'm glad they are listening to you. What pain meds did they give you? I'm glad to hear things have sorted out. Did they give any mention to what it may be?

I'm no doctor, but I am going to say that high blood pressure is caused by the fact you've been so stressed out with the hospital, the move and the crappy doctors and illness you have! Give it chance, de-stress a little and see if it goes back to normal! I wouldn't worry about the high blood pressure so much, probably making it higher by worrying about it. ;)
 
I don't even know what it was, to be honest, I was pretty miserable. Must've been something pretty strong because I was fairly out of it after.

Doctor said that I basically have every single symptom of a gastric ulcer. And some stuff that doesn't add up. So I might have more than one thing, lucky me. I mean the first thing to really find out is where I'm bleeding and how to stop it :p If it is an ulcer or GERD or something like that causing the bleeding then medication is clearly not adequate in handling it so I might need surgery.

And if it's something else, I mean I probably need completely different treatment than what they have me on now so no wonder it's not working.
 
Ah, so they gave you something there and then rather than prescribing you something?

That's what they said to me too, have you had the H. Pylori test yet? Or did they take the blood from you to test for that? If you have textbook gastric ulcer symptoms, then they need to do that. If you DO have a gastric ulcer, then the Omeprazole should have given it to ample time to heal, unless it IS caused by H. Pylori, which in that case, you will need to be taking antibiotics too. That should then help. I knew it was odd when you said you were bleeding when you didn't take the Omeprazole, because all that does is reduce your stomach acid - and I remember telling you before that it sounded pretty much like an ulcer in the upper gastric region because of it stopping your bleeding. They do need to act quick though on this.
 
I have no idea how long it'll be, to be honest. But I mean this has been going on for nearly 8 months now, so... It can't be that emergent :p And my bloodwork wasn't worse than a month ago, so I mean. Not that it's good to walk around bleeding or anything. But for the most part it seems to be somewhat controlled.

And no H. Pylori according to the tests. And two clear scopes on top of that so I mean something doesn't add up here. It's all very strange.
 
Pomegranite - I'm sorry you're dealing with so much pain! I don't know enough about anything to be of any help, but I'm sure others do so hang in here.

Izzie - I'm sorry you had to run in for an emerg appt, but I'm so glad you are getting better care! And I agree w/Kelleh, I think the blood pressure is from stress :p

I myself had a run for an emerg appt this weekend too :(. Found out that my spleen is for certain enlarged (well, was told I have "splenomegaly" - what a fun new word for me!) but there was nothing dire wrong, so pain meds and now waiting for my GPs office to open as the ED wanted me seen as a follow up ASAP. Had a really rough night last night with the pain even w/meds, but finally found a way to sleep through it around 2am. Hoping that doesn't repeat :(
 
Izzie said:
I have no idea how long it'll be, to be honest. But I mean this has been going on for nearly 8 months now, so... It can't be that emergent :p And my bloodwork wasn't worse than a month ago, so I mean. Not that it's good to walk around bleeding or anything. But for the most part it seems to be somewhat controlled.

And no H. Pylori according to the tests. And two clear scopes on top of that so I mean something doesn't add up here. It's all very strange.
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Okay, this hurts my head. :eek2: Then Omeprazole is not strong enough. They need to look to see if there is an ulcer, so you need some emergency scopes I reckon. Seems like your doctors are working better at this hospital, so just leave it up to the experts. :)

@wildmtnhoney - splenomegaly.. what a cool word - but sounds nasty! :-( I hope that you get through this soon, that sounds absolutely awful. I hope it doesn't repeat for you either!
 
kellehbeans said:
Okay, this hurts my head. :eek2: Then Omeprazole is not strong enough. They need to look to see if there is an ulcer, so you need some emergency scopes I reckon. Seems like your doctors are working better at this hospital, so just leave it up to the experts. :)

@wildmtnhoney - splenomegaly.. what a cool word - but sounds nasty! :-( I hope that you get through this soon, that sounds absolutely awful. I hope it doesn't repeat for you either!
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Will definitely get another go with the scope. But he didn't seem to think it was all that emergent. And I guess it's not if my bloods are the same as they were a whole month ago. But as long as he's sent the referal up I can just call the GI directly and hurry it along if I have to.

The odd thing is that I'm much better sometimes. And then I get episodes of every symptom worsening for a few weeks. And then usually it gets a little better again.

It's giving me a headache too tbh :rof:
 
Izzie said:
Will definitely get another go with the scope. But he didn't seem to think it was all that emergent. And I guess it's not if my bloods are the same as they were a whole month ago. But as long as he's sent the referal up I can just call the GI directly and hurry it along if I have to.

The odd thing is that I'm much better sometimes. And then I get episodes of every symptom worsening for a few weeks. And then usually it gets a little better again.

It's giving me a headache too tbh :rof:
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Hopefully that'll be the case. I have my fingers crossed for you.

I wish mine got better in stages like that, mine just seems to get worse every day. I've given up with completely restricted eating, just because I'm so down on everything right now. Everything is bad at home, with my volunteer work, and just general life. I just feel so down. The only time I'm happy is with my boyfriend, but we can't always be together, even if we tried. I'm fed up with this crappy town and it's crappy inhabitants. Every time I come home, I'm suddenly back down in deep, dark depression.

I have a GP appointment tomorrow. My steroids aren't working, the inflammation is getting worse, so what does this mean now? Are they going to try supressing my immune system as if I had IBD, or are they going to refer me for surgery? Surgery or just to yet another specialist which will take probably another good 3 months to get an appointment. I'm tired of this, tired of everything. I want to go to gym tonight, but I've stopped the NSAIDs and my aches and pains are slowly filtering back throughout the day. I can't take them for the rest of my life, nor do I plan to.

High blood pressure can cause headaches too, so I think you are just stressed, so cool down! Read a good book or go for a nice stroll!
 
ARG! So I called the GP, and they act like all I want is pain meds :( I try to be clear that the ED gave me tramadol, and I don't like the way even that makes me feel, so today I'm just taking tylenol (which seems to work just as well, the tramadol just made me loopier) and it's not that I need anything for the PAIN, I am worried about what is WRONG - why is my spleen getting bigger? Isn't that a concern?
 
Izzie - YES, I often get unsolicited advice from certain family members of mine. It drives me nuts! Particularly my mother. In a nutshell - when I first got sick, the doctor told me it could be something like Crohn's or celiac. I conveyed this to my mother, and she talked to some weird distant cousin of hers who happens to have celiac. Because of this celiac connection on one branch of the family tree, my mother decided that I must have celiac, and that she must have given it to me, therefore she must have it too. She got my aunt and my cousin on board the celiac crazy train, too. They all self-diagnosed even though none of them were ill like I was (and none of them have been to the doctor or actually been tested). And, I turned out to not have celiac - I've never noticed any correlation between gluten and my symptoms (it's actually a very safe food for me), and I've tested negative multiple times both on the blood test and the upper endoscopy w/ biopsy. My GI and GP both say they are 100% confident that I do not have celiac. But my mother is still weirdly convinced that gluten is the root of all evil and that I'd magically have perfect health forever if I just quit eating gluten. Um, no. It's insulting, frankly, to try to tell me that my issue is that simple when I know it isn't, and it's also insulting that she doesn't listen to me. Not that I'm surprised as she's never really listened to me or noticed me. But it does suck that she's basically taken my illness and tried to use it against me or one-up me or victim-blame me because I still eat gluten.

My dad, on the other hand, is completely clueless but he actually cares. He'll ask me how I'm doing, I automatically say "fine" like I always say, but then he will always ask, "No really, how are you?" When I explain what tests I've had or what meds I'm on lately, I can tell that he gets confused right away even though I try to explain everything in simple layman's terms. So he doesn't really understand, but he definitely cares and doesn't just try to lecture me about what I should be eating or whatever. And that's what I really need! Just someone to genuinely care and not try to push their own anti-gluten agenda or wacky ideas onto me.

So yeah. I completely get it. It's not helpful and it sucks when you have a family member like my mother. I hope you have someone in your life who does care and doesn't try to lecture you on what you should/shouldn't do to "cure" yourself.
 
I've gotten so much "advice" it's ridiculous.

But then I have my mother who cares arguably too much. I kind of have to protect her from the truth sometimes because she gets so worried. I mean it IS scary to be sick and not know what's going on. My whole year has been ruined by this, so far. And she kind of takes that on herself and gets all wound up about it.
 
Well, this is new. Walking to get a bar of chocolate from my vending machine, and I thought I was struck with a case of tenesmus. Ended up going to the toilet on the way anyway, and I DID need to go. It was so sudden, the urge, that it took me by surprise. I've been suffering from a lot of tenesmus so this was even more shocking that it actually led to something.
 
kellehbeans said:
Hopefully that'll be the case. I have my fingers crossed for you.

I wish mine got better in stages like that, mine just seems to get worse every day. I've given up with completely restricted eating, just because I'm so down on everything right now. Everything is bad at home, with my volunteer work, and just general life. I just feel so down. The only time I'm happy is with my boyfriend, but we can't always be together, even if we tried. I'm fed up with this crappy town and it's crappy inhabitants. Every time I come home, I'm suddenly back down in deep, dark depression.

I have a GP appointment tomorrow. My steroids aren't working, the inflammation is getting worse, so what does this mean now? Are they going to try supressing my immune system as if I had IBD, or are they going to refer me for surgery? Surgery or just to yet another specialist which will take probably another good 3 months to get an appointment. I'm tired of this, tired of everything. I want to go to gym tonight, but I've stopped the NSAIDs and my aches and pains are slowly filtering back throughout the day. I can't take them for the rest of my life, nor do I plan to.

High blood pressure can cause headaches too, so I think you are just stressed, so cool down! Read a good book or go for a nice stroll!
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I recognize the feeling. Lately it's been like the perfect storm of crappy things are happening at once. My "cure" for feeling this way is usually to stay busy, but being sick that's not the easiest thing. Pain zaps you of basically all energy, I've found. And then the stress of having to hound doctors to actually get some help and answers.

Have they ever figured out what the root cause of your problems is?
 
Izzie said:
I recognize the feeling. Lately it's been like the perfect storm of crappy things are happening at once. My "cure" for feeling this way is usually to stay busy, but being sick that's not the easiest thing. Pain zaps you of basically all energy, I've found. And then the stress of having to hound doctors to actually get some help and answers.

Have they ever figured out what the root cause of your problems is?
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It doesn't help that now I am being referred to a psychiatrist and that's scaring the living daylights out of me. All I can do is sit back and wait for the referral to come through. I have no idea what it entails. A few of my friends I made through therapy groups have assured me that it is nothing to worry about, including a psychologist, but it does not seem to phase me and I still feel awful about it.

Busy is the way to go. I am actually starting to think, unless I can make myself suddenly better in the next hour and half, that I'm not going to go to the gym. I feel fatigued, and I am going to blame the Mocha I had. Coffee + chocolate = hell. Then I had a chocolate bar to try and help my mood. Bad idea. Heartburn is not even being cured by the fluid Gaviscon and I've taken 4 tablespoons despite being advised not to take anything. I just can't go on like this today. I feel so down, I don't need my stomach hurting and now my joints flaring back up again.

They did not find out now, but I became self-aware and I know the roots. Doesn't mean it makes them any easier, you just have to get over them yourself with the techniques you learn from therapy and just generally talking them through. Trust me, there are people a lot worse off than me around, but I have issues. Doesn't help that I have a possibility of being diagnosed with borderline personality disorder (it isn't as bad as it sounds, I always thought it meant split personality!) and I can see that I do have it, despite years of denying it and covering it up with other mental illnesses without realising.

I just want yet another holiday. Roll on the end of September!
 
kellehbeans said:
It doesn't help that now I am being referred to a psychiatrist and that's scaring the living daylights out of me. All I can do is sit back and wait for the referral to come through. I have no idea what it entails. A few of my friends I made through therapy groups have assured me that it is nothing to worry about, including a psychologist, but it does not seem to phase me and I still feel awful about it.

Busy is the way to go. I am actually starting to think, unless I can make myself suddenly better in the next hour and half, that I'm not going to go to the gym. I feel fatigued, and I am going to blame the Mocha I had. Coffee + chocolate = hell. Then I had a chocolate bar to try and help my mood. Bad idea. Heartburn is not even being cured by the fluid Gaviscon and I've taken 4 tablespoons despite being advised not to take anything. I just can't go on like this today. I feel so down, I don't need my stomach hurting and now my joints flaring back up again.

They did not find out now, but I became self-aware and I know the roots. Doesn't mean it makes them any easier, you just have to get over them yourself with the techniques you learn from therapy and just generally talking them through. Trust me, there are people a lot worse off than me around, but I have issues. Doesn't help that I have a possibility of being diagnosed with borderline personality disorder (it isn't as bad as it sounds, I always thought it meant split personality!) and I can see that I do have it, despite years of denying it and covering it up with other mental illnesses without realising.

I just want yet another holiday. Roll on the end of September!
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I was refering to your GI issues actually, but I definitely know what it's like to deal with various psychiatric difficulties as well. I have ADHD, which is fine most of the time but just makes everything kind of extra chaotic. And have a tendency to get depressed and anxious at times. I've only ever had bad experiences with therapy though. I wish that wasn't the case, it sounds like a lot of people are helped by it!
 
Izzie said:
I was refering to your GI issues actually, but I definitely know what it's like to deal with various psychiatric difficulties as well. I have ADHD, which is fine most of the time but just makes everything kind of extra chaotic. And have a tendency to get depressed and anxious at times. I've only ever had bad experiences with therapy though. I wish that wasn't the case, it sounds like a lot of people are helped by it!
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I don't get anxious really, I just become so numb and end up not caring. Or depressed, very, very depressed. My psychologist made me feel really down last week by asking me why I came off of my anti-depressants. It made me feel useless, although she obviously did not mean it in the way I took it. I'm good at taking things the wrong way. Slowly though, I am working it all out. I'm starting to understand my boyfriend more as I get to know him. Parents I still struggle with though and I've known them 23 years. :rof:

I just can't stop rushing to the toilet, only to produce nothing or something really small or just mucus. I have textbook proctitis symptoms. The only thing that it could possibly be caused by for me would be IBD as there is no way I could have obtained it from anything else. Oh well, doctors tomorrow. I'll tell him, but he'll probably not care that I'm constantly in the loo, producing next to nothing. Feel so sick today. :confused2:
 
Sorry for double post, but was meant to ask if anybody wiped orange-y coloured stool away after BM? Well, that was my original question anyway - my new question is, does anybody wipe away orange fluid/water? It's literally all I just passed with a small amount of mucus and I wiped all orange coloured water. Does anybody know what this could be? I did a quick search but everybody seems to say about orange oily discharge, but mine is not oily??
 
Izzie said:
I recognize the feeling. Lately it's been like the perfect storm of crappy things are happening at once. My "cure" for feeling this way is usually to stay busy, but being sick that's not the easiest thing.
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Izzie, do you do any crafts? When I'm feeling crappy, I find that I can still crochet. So I crochet a lot - it doesn't add to my pain/symptoms/fatigue, and I feel worthwhile while crocheting and I end up with a nice usable item (scarf, blanket, etc) when I'm finished. Can you do something like that?
 
Kelleh, I've had orange stools but only when I'm in a flare, so I presume it's just a flare thing. Sorry I don't have a more informative answer for you than that! But with the orange stools, the urgency & frequency, the pain, etc - I'd say it sure sounds like you're in a flare. You're going to the hospital tomorrow, correct? Make sure to let them know about all of your symptoms! Hopefully they can do some tests to determine what's going on. Good luck and keep us posted on how tomorrow goes!
 
Cat-a-Tonic said:
Kelleh, I've had orange stools but only when I'm in a flare, so I presume it's just a flare thing. Sorry I don't have a more informative answer for you than that! But with the orange stools, the urgency & frequency, the pain, etc - I'd say it sure sounds like you're in a flare. You're going to the hospital tomorrow, correct? Make sure to let them know about all of your symptoms! Hopefully they can do some tests to determine what's going on. Good luck and keep us posted on how tomorrow goes!
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Is that in general, or just when you wipe or both? I'm not going to go hospital, just to my GP. I'm hoping he's going to be good for a 2nd opinion. At the moment I'm TERRIFIED of going to the doctors. :( I don't know what he's going to poke around. My pain is getting worse daily when I insert the nozzle so surely these steroids aren't working!! I'll try and remember to tell him everything but I'm not sure what good it is going to do. :( I will let you know how it goes - thankfully it's after work tomorrow so I don't even have to take time off of work!
 
Kelleh, it's in general for me - in a bad flare, I can turn the toilet bowl orange with watery orange diarrhea! Or sometimes it'll just be a little bit of orange diarrhea. It's usually more than just on the TP, though, as orange d is one of my flare symptoms - when my stool turns orange, I get the chills really bad, and my face goes completely pale, that's when I know I'm in the start of a bad flare. Those are my main warning signs that I'm inflamed and am about to have a bad time.

Do you have any other new symptoms besides the orange when wiping and the urgency/frequency? At any rate, make sure the doctor knows that these are NEW symptoms. New symptoms should be taken seriously and they should make an effort to figure out why you're having new symptoms. (Are you still on the NSAIDs? It's possible they may be making things worse.)

I'm sorry you're terrified, I would be too given the amount of pain you're in and the likelihood that the doctor will do some poking & prodding. You can do this - just have to be brave. Make sure to explain to them how much pain you're in, and ask them to be extremely careful when they examine you. Doctors take an oath to "do no harm" so let them know if they're hurting you! Don't just tough it out during the examination, and remember that it's okay to cry. It may even be beneficial to cry, at times I've had doctors take me more seriously and/or try harder to help me when I've cried in the exam room. My GI has seen me cry an embarrassing number of times. But, it's okay - do what it takes to get them to help you, because clearly you do need to start feeling better already! Good luck, I hope they can figure some things out with a minimum of poking and prodding.
 
It's only just started, the orange stool, and orange on wiping and today was the first time for orange fluid. New symptoms are just my joints aching, especially knees and back and headaches coming back. My stool is also soft but some keeps getting stuck and I have no idea why! Still mucus-y etc. tenesmus is an absolute pain and as I said, sometimes it leads to very small bowel movements which happen frequently, or just nothing at all. That saying, I haven't woken up in the middle of the night for a good 3 months now with night sweats/urge to go loo.

Stopped taking the NSAIDs and it's showed me they were masking my aches and pains but not really helping in general. I just wanted to see before I went doctors tomorrow so I can tell him that.

Thank you, that means a lot. I'm just scared they're going to say 'you need surgery' - for the fissures and haemorrhoids. Fissures exist. But I'm not so sure about the piles my doctor said I had before this one. I have got to a stage when using the nozzle for my ointment makes me swear so maybe this'll happen at the doctors tomorrow lol! Thank you so much :)
 
My throat is so sore! Ughh. Stupid reflux. Really hoping the wait for my GI appointment isn't going to be too long because I am so freaking sick of this.

But then I'm probably just going to have to go through the same things and the same tests and have them not show anything.

I really feel like I'm going insane from all this because I talk to doctors, I tell them my symptoms, I say that I literally cannot live my life like this, that I've missed ridiculous amounts of work and school this year, that I'm freaking scared and in pain and have NO energy whatsoever, and it's just like "oh okay well I don't know".

I'm supposed to start school again literally in a week and I don't think I can.
 
Izzie said:
My throat is so sore! Ughh. Stupid reflux. Really hoping the wait for my GI appointment isn't going to be too long because I am so freaking sick of this.

But then I'm probably just going to have to go through the same things and the same tests and have them not show anything.

I really feel like I'm going insane from all this because I talk to doctors, I tell them my symptoms, I say that I literally cannot live my life like this, that I've missed ridiculous amounts of work and school this year, that I'm freaking scared and in pain and have NO energy whatsoever, and it's just like "oh okay well I don't know".

I'm supposed to start school again literally in a week and I don't think I can.
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You never know, they may just be a little more analytic and also there may be more to look at this time round. I understand where you are coming from - I say the same things, it's just like 'give me a magic painkiller please!'.

Start school, do what you can. You may surprise yourself and it may also help your mind to be taken away from your stomach.
 
kellehbeans said:
You never know, they may just be a little more analytic and also there may be more to look at this time round. I understand where you are coming from - I say the same things, it's just like 'give me a magic painkiller please!'.

Start school, do what you can. You may surprise yourself and it may also help your mind to be taken away from your stomach.
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Oh I want to start school I'm just not sure it's physically possible. I have a longish commute and lately I've really been needing to be close to a bathroom in the mornings... Shitting yourself on public transport is not my idea of a good time, I gotta tell ya :lol2:
 
Izzie said:
Oh I want to start school I'm just not sure it's physically possible. I have a longish commute and lately I've really been needing to be close to a bathroom in the mornings... Shitting yourself on public transport is not my idea of a good time, I gotta tell ya :lol2:
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Stand near the toilet.. or just hide in it. :)
 
Izzie said:
I would if the bus I take had one, but alas... Not a very stomach illness-friendly commute I'm afraid. It'll be a lot of interesting mornings I'm sure :ylol:
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My Swedish best friend kept sending me Whatsapp messages last time she commuted from Karlstad to Vara, and I literally had 4 hours of 'I NEED TO PEE' because she couldn't get to the toilet.

Sorry, I presumed you were going to be on a train, not a bus! Otherwise my suggestion would have made a lot more sense!
 
kellehbeans said:
My Swedish best friend kept sending me Whatsapp messages last time she commuted from Karlstad to Vara, and I literally had 4 hours of 'I NEED TO PEE' because she couldn't get to the toilet.

Sorry, I presumed you were going to be on a train, not a bus! Otherwise my suggestion would have made a lot more sense!
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I've commuted by train before and that was definitely easier.
 
Izzie said:
I've commuted by train before and that was definitely easier.
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Can you do that now, just so you can save yourself if you do need the toilet? I hope your train is better than the one I used to travel to Gothenburg - the toilet door was broken, and everybody kept walking in on everybody else! At this point in time, I did not know enough Swedish to notify them that the door was broken. I did find it amusing when an old woman walked in on a young man though. It was more entertaining than my window as it was smashed. Why I chose to sit there, I have no idea.

How are you feeling today?
 
kellehbeans said:
Can you do that now, just so you can save yourself if you do need the toilet? I hope your train is better than the one I used to travel to Gothenburg - the toilet door was broken, and everybody kept walking in on everybody else! At this point in time, I did not know enough Swedish to notify them that the door was broken. I did find it amusing when an old woman walked in on a young man though. It was more entertaining than my window as it was smashed. Why I chose to sit there, I have no idea.

How are you feeling today?
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The train is an extra hour of commute-time at this point, but I might end up having to do that anyway just to save myself the trouble. Will see.

Still feel terrible. My throat is so sore it's out of this world, and I can't eat ANYTHING without pain right now. Everything tastes weird and feels "spicy" somehow - even plain white bread.

The GI is going to call me next week, I basically called this morning and begged because I feel so terrible. I hate when people sound so sceptical! To the nurse, I was like "I really do think I have reflux, I have all the symptoms" and she goes "well you're on medication for that so maybe you're just stressed out and feeling bad"

And I was just like well of course I'm stressed. I'm sick and can't get in touch with an actual doctor who can help, I think you'd be stressed too!
 
Izzie said:
The train is an extra hour of commute-time at this point, but I might end up having to do that anyway just to save myself the trouble. Will see.

Still feel terrible. My throat is so sore it's out of this world, and I can't eat ANYTHING without pain right now. Everything tastes weird and feels "spicy" somehow - even plain white bread.

The GI is going to call me next week, I basically called this morning and begged because I feel so terrible. I hate when people sound so sceptical! To the nurse, I was like "I really do think I have reflux, I have all the symptoms" and she goes "well you're on medication for that so maybe you're just stressed out and feeling bad"

And I was just like well of course I'm stressed. I'm sick and can't get in touch with an actual doctor who can help, I think you'd be stressed too!
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If it gets you to school more comfortably, then that is what you need to do. Try and not miss out on education as much as you can. Is it more expensive to travel by train?

Are you sure you do not have a cold coming? I get that 'spicy' feeling when I'm coming down with a cold or the flu. My reflux pain is generally a different feeling to this.

Reflux can be made worse by stress, so in that aspect, she's correct to an extent. But, you shouldn't have the reflux any way, and there's a chance you need your meds adjusted to control the symptoms. What dosage Omeprazole are you on?
 
kellehbeans said:
If it gets you to school more comfortably, then that is what you need to do. Try and not miss out on education as much as you can. Is it more expensive to travel by train?

Are you sure you do not have a cold coming? I get that 'spicy' feeling when I'm coming down with a cold or the flu. My reflux pain is generally a different feeling to this.

Reflux can be made worse by stress, so in that aspect, she's correct to an extent. But, you shouldn't have the reflux any way, and there's a chance you need your meds adjusted to control the symptoms. What dosage Omeprazole are you on?
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40 mg a day. I've mentioned wanting to possibly up the dose to THREE doctors right now but they keep saying they can't do that, only a specialist can, and getting in touch with one of those is like trying to get a meeting with royalty, right now :p

And yeah of course stress makes it worse. But the thing I hate about doctors is that they blame stress 100%. It's like okay, yes, I'm feeling even worse at the moment because I'm also stressed, does that absolve them of any professional obligation to help?!
 
Izzie said:
40 mg a day. I've mentioned wanting to possibly up the dose to THREE doctors right now but they keep saying they can't do that, only a specialist can, and getting in touch with one of those is like trying to get a meeting with royalty, right now :p

And yeah of course stress makes it worse. But the thing I hate about doctors is that they blame stress 100%. It's like okay, yes, I'm feeling even worse at the moment because I'm also stressed, does that absolve them of any professional obligation to help?!
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I feel the reflux come back into my mouth. It hurts. I hate it. Then when I actually throw up, ugh. Let's not even go there.

40mg a day, is that 2 pills a day at 20mg? Can you not just see your own doctor about putting it up? In the UK, the GP can just prescribe it. Are you registered a new doctor's office in your new town or just with the hospital?

100% blame on stress is very frustrating, so I can see why you're stressing out even more - nor do I blame you for this! But no, it does not stop them from helping you. You should have probably had a tantrum on the phone and told them that them saying that stresses you out further, and demand more tests. :)
 
kellehbeans said:
I feel the reflux come back into my mouth. It hurts. I hate it. Then when I actually throw up, ugh. Let's not even go there.

40mg a day, is that 2 pills a day at 20mg? Can you not just see your own doctor about putting it up? In the UK, the GP can just prescribe it. Are you registered a new doctor's office in your new town or just with the hospital?

100% blame on stress is very frustrating, so I can see why you're stressing out even more - nor do I blame you for this! But no, it does not stop them from helping you. You should have probably had a tantrum on the phone and told them that them saying that stresses you out further, and demand more tests. :)
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That's pretty much what I did tbh :rof: I try not to go off on the nurses though as they are often very nice and helpful.

I've made an appointment with a GP too, actually, but that's a week or so ahead. I'm just going at it from all angles right now :p Several doctors have told me they can't prescribe me a higher dose, that this is the max dosage thata non-specialist can prescribe. Which sounds odd to me, like why not just call a specialist and consult with them then??

And yes, that is 20mg twice a day. Reflux so it hurts your mouth is nooo fun. I had to go out and get numbing lozenges this morning so I could try to have breakfast...

I just want to at least find a doctor who agrees that I HAVE reflux in the first place so I can get some friggin help :tongue:
 
Izzie said:
That's pretty much what I did tbh :rof: I try not to go off on the nurses though as they are often very nice and helpful.

I've made an appointment with a GP too, actually, but that's a week or so ahead. I'm just going at it from all angles right now :p Several doctors have told me they can't prescribe me a higher dose, that this is the max dosage thata non-specialist can prescribe. Which sounds odd to me, like why not just call a specialist and consult with them then??

And yes, that is 20mg twice a day. Reflux so it hurts your mouth is nooo fun. I had to go out and get numbing lozenges this morning so I could try to have breakfast...

I just want to at least find a doctor who agrees that I HAVE reflux in the first place so I can get some friggin help :tongue:
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Nurses generally are, I find the doctors are the pigs, especially in my surgery. Although, once I had an extremely rude nurse and I hated her, so much.

Maybe you need to go them yourself. Go to your GP and see what they have to say, they may be a little more helpful.
 
I had terrible symptoms for a month that subsided about 2 weeks ago. On friday i felt fine, went for dinner (ate lots of bread , first time in months) and have been ill since, even woke up on friday night feeling sick and needing the loo..which has never happened before. My symptoms are for the most part stomach aches in the epigastric area along with a feeling of utter nausea, weakness, pallor and hot/cold feelings. I do get diarrhea but to a lesser extent than i used to. Awaiting my pill cam results which is taking forever, NHS are so slow...
 
Izzie, is omeprazole available without a prescription over there? Here in the US, you can buy it right off the shelf (20 mg pills) or you can get it on prescription. When I was on omeprazole, I did both - I'd take my prescription dose, but if I felt I needed more that day then I'd take one or two of the over-the-counter pills too. Maybe not advisable to do long-term, but it worked for me.

Also, is esomeprazole (Nexium) available there? It's a very similar med but it works better for me than regular omeprazole. You might want to ask the doctor about that when you're finally able to see one.

As for your commute - you may want to wear some sort of either sanitary pad or adult diaper, just in case. Or bring a change of clothes with you. Just be prepared - you don't want to be far from home with limited means of cleaning yourself up if you do have a bathroom accident.

I really feel for you on the reflux stuff. For quite awhile, I'd have sore throats in the mornings as well - but, since I tend to lie on my left side when I sleep, only the left side of my throat would hurt. It was like the acid was pooling in my throat while I slept but it only pooled on the side that was down. It was odd and not at all pleasant.
 
Cat-a-Tonic said:
Izzie, is omeprazole available without a prescription over there? Here in the US, you can buy it right off the shelf (20 mg pills) or you can get it on prescription. When I was on omeprazole, I did both - I'd take my prescription dose, but if I felt I needed more that day then I'd take one or two of the over-the-counter pills too. Maybe not advisable to do long-term, but it worked for me.

Also, is esomeprazole (Nexium) available there? It's a very similar med but it works better for me than regular omeprazole. You might want to ask the doctor about that when you're finally able to see one.

As for your commute - you may want to wear some sort of either sanitary pad or adult diaper, just in case. Or bring a change of clothes with you. Just be prepared - you don't want to be far from home with limited means of cleaning yourself up if you do have a bathroom accident.

I really feel for you on the reflux stuff. For quite awhile, I'd have sore throats in the mornings as well - but, since I tend to lie on my left side when I sleep, only the left side of my throat would hurt. It was like the acid was pooling in my throat while I slept but it only pooled on the side that was down. It was odd and not at all pleasant.
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I think Nexium is available, yes. I'm waiting on both the GP and the GI right now, so hopefully one of the two will turn out to be helpful. I'm kind of in a weird in between stage where I can't get to a new GI quite yet (waiting on a referral) and have to make do with the old one for a while longer. And I really don't like that guy :p He's not impossible, but you have to get angry and basically argue for anything you need, which I don't like. He acts like everything he does is just one more thing to do before he can get rid of me, not actually solve the problem.

He literally has told me that I don't have reflux at all, I only have "phantom IBS pains" whatever the frick that means. I'm just not going to back down next time I talk to him, I OBVIOUSLY don't just have IBS! I find it ridiculous that you have to get angry and shout at someone in order to get decent care, though.

And yes, omeprazole is available OTC. I've had a few weeks here and there where I've been without a prescription because doctors are both slow and unhelpful some times and then I've just been on the OTC variety. I've considered sneaking in an extra here and there on days that are just HORRIBLE, they've not recommended it but they HAVE told me that some people are on as much as 80 mg a day so it's probably not going to kill me or anything :biggrin:

I'm not looking forward to the commute at aaaall, but I'll have to work out a system. As someone who's been pretty healthy before this, it's a pretty big change and not exactly an ego boost to have to even think about this kinda stuff.

At least it seems like the bleeding's stopped for this time... *sigh* I'm tired :p Soooo very tired of this.
 
Doctors. Done. Much more helpful, but he couldn't really answer anything about my joint pain and stomach pain. However, he said that my discharge was probably more likely from my super angry inflamed piles I have. He poked with a finger and also the telescope thing and IT HURT!! But, with the amount he could see, he couldn't see any obvious signs of proctitis so looks like that may be off the cards, but probably need a sigmoidoscopy for that. But he has prescribed me Predisolone 5mg suppositories - a 5 day supply for twice a day. Then he told me to try Lactulose as my rectum had apparently become so tight that it hadn't been emptying properly (and boy don't I know about it!) so I have that too... So, shall be trying all later. He basically told to to wait and explain to my GI about everything else.

Oh, asked about fructose malabsorption too and apparently it's not readily available to get tested for it in the UK so just told me to do it by process of elimination.
 
Izzie, I know what you mean about not enjoying the fact that we have to fight our doctors sometimes. I am normally pretty quiet and shy, but I've learned that I have to ask my doctors for what I want - and if they say no, they had better have a very good reason why, or I'll continue to fight them for it. It's not fun, but it's necessary when you're chronically ill.

And yes, I've also heard of people being on 80 mg of omeprazole, so I don't think it'd be a huge deal to take a bit extra omeprazole here and there. For awhile I was on 80 mg of esomeprazole - but I was on Asacol at that time, and at that high of a dose of esomeprazole, I wasn't able to break down my Asacol tablets properly (Asacol has a special coating on it which requires a certain pH in order to break it down, so that amount of esomeprazole was enough to mess with my gut pH enough that my pills weren't breaking down and were passing through me undigested - not good). That was the only issue I noticed on 80 mg of esomeprazole, though. Other than that, it was fine for the short time that I was on that dosage.

I know it's not an ego boost and is rather humiliating to have to think about diapers and pads, but trust me - it's way more humiliating to mess yourself. I've only had one "accident" and fortunately I was at home and could clean myself up in privacy and nobody was the wiser - but even so, it was extremely humiliating and I just went into the shower and cried. It was horrifying that as an adult, I could have a bathroom accident in my pants like that. Even though I had been sick for awhile at that point and thought I could deal with everything this illness can throw at me, I clearly did not deal well with that situation. And I can't imagine repeating that episode in public. As a result, I keep a stash of pads everywhere now - in my desk at work, in my gym bag, in my car. They have come in handy, too. I have had on-again off-again fissures, and at one point a fissure decided to just drip, drip, drip blood. And of course I was wearing khaki pants that day, eek! Fortunately I had some pads on hand and they saved the day. It's much, much better safe than sorry.

Kelleh, it sounds like you're getting somewhere with treatment, that's good! I hope the pred supps and the lactulose help. 5 days isn't very long, though. When I was on steroid supps for my bleeding internal hemmies, I was on the supps for 5 or 6 weeks. 5 days might not be long enough! I don't suppose you could call your doctor once the 5 days is up and request a refill? Steroid supps aren't like taking oral steroids - you don't need to taper off of them, and there's a very low risk of side effects (for me it was weight gain - about 5 lbs over the course of 5/6 weeks - and slight difficulty falling and staying asleep). So most doctors are okay with prescribing steroid supps as they don't carry the risks that oral steroids do. Definitely call your doctor again if you get past the 5 days and feel like more time would benefit you.

How's everybody doing today? I'm okay-ish. Work has been crazy stressful. My guts have been okay for the most part although I've been eating things I shouldn't - I had pizza which oddly enough constipated me (I'm lactose intolerant and usually pizza just goes right through me), and then I had some mushrooms which don't digest very well so I had some prickly abdo pains from that. I think the mushrooms got the constipated plug to move along, though, so I've finally been pooing more than just hard little rabbit poos. I'm pretty exhausted, but that's fairly normal for me, and I'm chalking it up to the work stress I've been dealing with lately. I'm still going to the gym as often as I can - lately that's been 3-4 times per week on a good week. Working out is my de-stresser, so hopefully once things calm down at work a bit, and if I can just manage to eat the right things, then I should be doing pretty well.
 
@cat - I told him I know why this started, and that's because of a very bad bout of D, and at 8 weeks, it just hasn't gone down at all. He said to basically hold out until the GI and he'd do everything he can to get rid of this pesky side-effect of whatever I have. He said call back if they have not helped after 5 days. I read the uses of predisolone suppositories leaflet - and the only haemorrhoid related incident they help is some kind of haemorrhoid proctitis - guessing it just meant inflamed, but it said inflamed elsewhere for something else! Either way, hoping these will help but at the time time, it's just masking my symptoms! Guess that's not such a bad thing, but would love a conclusion to this all..... Here goes nothing with the suppositories! (I've never used them before!!)

I'm really sorry to hear you're going through a rough time! Constipation is weird when you know you have an intolerance to something, as you usually suspect D!
 
I've had very mixed feelings about everything this week. I've been kinda scared? Because I keep having bleeding that no one knows where it's coming from, and on my bad days I really FEEL sick, and sometimes I let my anxiety get away with me and then it's all "oh it's an ulcer and it's going to perforate and I'll bleed to death in my sleep" or "since they can't find the problem it's probably cancer" or "I'll never feel healthy again in my life".

I try to meditate that kind of anxiety away and it usually helps me relax a little, at least.

But on a positive note I really do want to go back to work and I have the most amazing, understanding boss in the history of the world and she's so willing to help me adjust my hours and have longer breaks and she's just the boss everyone should have, to be honest. So I'm hoping that even if I'm having a rough patch with my symptoms right now I can still do some work this semester.
 
I know that feeling of worry, you're not alone. I used to do it a lot more when I was younger though than I do now. Mindfulness is also a good task you could do to help you relax a bit? It's very helpful. Glad to hear you have somebody you can rely on somewhere!

Myself, I am dead worried and I'm starting to feel worse and worse today. :(
 
Izzie and Kelleh, I'm sorry about the stress/worry on both of you! I enjoy mindfulness, myself sometimes. Just remembering to be "in the moment" -- although when the moment includes pain, sometimes I enjoy knitting or adult coloring books more!

Cat, how weird to get constipation instead of D! I'd be confused too.

Now my own dr rant (again?). I saw my GP on Monday. She didn't examine me at all (well she looked at me as I sat in a chair, I guess?). But she did ask, at several points, that I consider "what is it that you are doing in your daily life or habits that you think is leading to these pains?" I got so angry I burst into tears and asked "did you really just suggest I'm causing my own pain???" She backpedaled a bit, but stayed on basically the same track. She went through all the imaging I've had done (quite a bit, I'll admit) and said because they haven't found anything yet, it's time for me to stop looking for answers and to go to a chronic pain clinic. She wrote the referral before I could agree or not. She suggested over and over that it is something I am doing, either something I'm eating, or doing/not doing, stress, etc. I was/am so mad, and hurt. My husband was there, but he's not the kind to butt in and say anything, so I finally turned to him and asked "do you feel I'm more stressed *before* the worst bouts set in?" and he said absolutely not, you get more stressed during, obviously. Then he told the dr that one thing he would like her to look closer at is my sleep. I'm on a cpap for sleep apnea, but he still notices me not breathing at night, and I'm exhausted all day long. I've never snored. I just stop breathing. So she wrote a referral to sleep specialist (never seen one before, they just sent me off to the sleep lab and got me a cpap before). So I'm waiting for those two specialists to call.

In the mean time, my mom just happened to work as a CPA for a local dr who is known locally as being a "Dr House" (from the tv series) sort of guy as far as being able to figure out difficult cases. He's written a ton of studies, edits major medical journals, etc etc. and of course is always booked. BUT, she knows him personally. She called his wife (who works in his office) directly, begged, and they are going to call me today to set up an appt!! He's now a specialist, but still has an internist background and license, and interestingly, still lectures at the teaching hospital I've been going to. My mom sent him a long email with my history so he knows the basics. They'll send the request for records today. He warned that he'll want to redo a bunch of lab work, etc. and will have to send me off to specialists as needed, but he'll be happy to be my internist for a time to help get things sorted.

So I guess that's a sort of happy ending?
 
@Wildmtnhoney - That's great news to hear! Let me know how that goes and when you get an appointment! Redoing some lab work will be fine, especially if it gets you to the end result you require, then that is all that matters! What have you done if you don't mind me asking?
 
Wildmthoney - So sorry about the attitude of that doctor, it's one I recognize all too well. The first 15 or so times I saw doctors about this problem I was calm and polite. Now I get so angry. It's like you have to in order for anything to happen. Hopefully your mothers friend will be able to shed some light on the issue. My backup plan has been to turn to private care, but I'm trying to wait just a little bit longer before I turn to that option.
 
Wildmtn, I *hate* doctors like the one that suggested you are causing your own pain - seriously, victim-blaming is just wrong! (I'm sure I told this story before, but I once saw a horrible doctor who walked into the room without so much as saying hello, he immediately started by saying, "You have IBS. And you look depressed. Would you like some Zoloft?" Uh, I "look" depressed?? Do they teach that in med school - if a sick patient comes in looking sick and isn't smiling, just throw some antidepressants at them without even asking them one single question first? Ugh!)

I'm glad you get to see a Dr. House type of doctor! I hope he's good, although of course I am familiar with the show so I know that the Dr. House character doesn't exactly have the best bedside manner. :p So I hope your new doc is more empathetic and kind than Dr. House! Keep us posted on how it goes.

Kelleh, you're getting worse? :( Are the steroid supps making things worse, or the lactulose? I bet the supps aren't fun to insert with as much pain and inflammation as you've described, but once they're in they should hopefully help. I hope things turn around soon! If not, give that doctor a call ASAP.

Izzie, it's totally okay to be scared - it's scary to be sick and not know what's going on or if you'll ever feel better. On my bad days I have similar thoughts. I'll be like, "I'm sick and I'm always going to be sick, this is just going to keep happening forever, this is all my life will ever be and it's never going to be better, it will only get worse". I know that thoughts like that are destructive so I try not to think like that, but on bad days it seems to be inevitable. That's not really helpful to you as I don't have answers for you, but you're not alone.

And, for what it's worth, you CAN feel better. I spent 2 wonderful years in remission and I'm working my way back (or maybe I'm back in remission but it's just a bit different this time? My GI thinks I'm in remission but I'm just not sure). Those 2 years that I was in remission, I felt not 100% better but definitely a solid 95% better much of the time (I still had to watch out for trigger foods, keep my stress levels in check, etc). It was a "new normal" but it was reasonably close to my old normal. I could exercise, travel, just generally live my life and feel quite well and happy. Yes, I still had bad days but they were not as bad as they could be and they were fewer and further between. My gut monster had a nice long nap and I basically just loved every second of it. So, I know that remission is possible - I lived it and I can get there again, even if it's a huge struggle. It's worth fighting for and it CAN get better. Yes, I know that I'll be sick forever, because the monster can't go away, it can only go to sleep. But life with a dormant gut monster is still good. So, long story short, it's okay to be scared and angry and sad and whatever else you're feeling - but you also need to keep pushing forward and fighting. :)

Update on me: The constipation is completely gone, that was fast. :p Right back to my usual 2-3 times per day diarrhea. (I usually go once first thing in the morning and 1-2 times at night just before bed - first thing in the morning and last thing at night is when my guts are the most grumbly.)
 
Kelleh, I have had a lot, so I may even have to go back and check to verify I'm getting everything in the right order!

Basically, as a kid, I often had loose stools and urgency, but never watery, and often general belly aches, but nothing really done about them and always related to stress by parents/grandparents/etc. Never had anything looked into until 2008, when I thought I was having appendicitis, the pain was RLQ and horrible. They did a CT, found "something" they thought might be a diverticulum, but no real inflammation, so sent me home w/pain meds and nothing else. Was ok but with minor pain off and on for years. Until...

Dec 2013- horrible RLQ pain, CT scan showed a clear diverticulum next to the appendix w/"fat stranding" (meaning inflammation around the colon) so I was admitted to the hospital on IV antibiotics for a day or two, then home antibiotics

New years eve 2013/new years 2014 - worst D of my life, and rising fever; stool sample positive for Cdiff, another hospitalization because I was so ill, then home on yet more antibiotics

The D has never really stopped since then. I mean it lets up here and there, and I've even had days that I'm constipated, but it always reverts to D. Various stool samples since have been neg for blood and neg for Cdiff.

April 2014 - neg for Celiac (super neg even) and calprotectin came back low as well; colonoscopy came back clear, with no microscopic colitis found on the biopsies

May 2014 - CT scan of abdomin due to increased pain - gall bladder had "sludge" but everything else came back "normal"
HIDA scan for gall bladder emptying -- 56% emptying (33% is normal)
H. Pilori - neg

2015 - colonoscopy #2 - neg again, but this time they did get a clearer picture of the cecal diverticulum

And that brings us to

July 2015 - worsening RLQ and new LUQ pains - CT scan of abdomin shows no inflammation around cecum/diverticulum area; spleen is at top end of "normal" at 12cm long

2 weeks later, LUQ pain not resolving, worse if possible -- ultrasound of LUQ shows spleen 14cm long, but no free fluid (GP blew this off as "differences in measuring techniques"); Liver function tests normal ranges, pancreatic enzyme tests normal ranges

Throughout all of this I have *also* had:

A spontaneous DVT in my left leg in 2010, when we also found I have Factor V Leiden (a blood clotting disorder) and I've been on blood thinners ever since. I've had several "scares" of PE and other DVTs along the way, but no other big ones.

My thyroid totally wigged out in March of this year. It went super high, then bottomed out, so now I'm on levothyroxin. I show increasing levels of thyroid autoantibodies, so they are thinking I may have hashimotos.

My knees are a wreck, swelling, pain, etc. Finally had them x-rayed this year. Osteoarthritis in both (and a surprise "remote fracture" in the right knee! Apparently I broke my right knee cap sometime in my past!) I'm only 38. Trialed physical therapy and failed. Waiting for insurance to approve injections (this new dr may help push that through, he doesn't like arthritis going untreated, according to my mom).

I *also* have migraines, some of them "complex" migraines that look like strokes/TIAs. Because of my bloodclotting thing, they freak out and think they may be TIAs.

I have a tiny hole in my heart that shunts blood backwards, a little bit. They said it was tiny. I get looked at again Monday. Because it goes backwards, it increases the odds of stroke/TIA.

I pass out whenever I try to exercise. This may be related to orthostatic hypotension (which I've just now been diagnosed with) so they have me on florinef and a high salt diet right now. OR it could be the heart hole thing. Which is why I have a treadmill test with heart ultrasound on Monday.

Because of the high salt diet + florinef +D I have to also watch my potassium. It's dropped a bit low once already.

Basically, I feel like I live at the Drs office, and I get the feeling they think I do, too, and they think it's all for naught, now! My specialists don't seem to think so -- I mean, the endocrine thinks my thyroid freaking out is real, the cardiologist seems to think there is legitimately something going on w/heart/blood pressure, and my neurologist keeps making appts to see me about migraines!

Whew, this is crazy long, thanks for making it to the end if you did!!
 
@Cat - I don't know so much if it is me getting worse, I'm just incredibly fatigued. The pain is just constant, but it's mild so I can deal with it. I have been to the toilet 4 times today. The first was literally *pure* yellow 'oil' which is apparently just fat. It could have also been the fact I ate lots of cookie dough pizza last night with friends! But, it has never happened before.

Perhaps it is the lactulose. No idea. If I start feeling worse, I've decided to call the doctor, but for now - I'm going to persevere. Just seem to be passing *a lot* of orange mucus, plus one BM with bloody mucus, but I'm going to put that down to the piles now. I also have a really bad feeling that my body does not like nuts and seeds and that may be causing the whole clog ups I keep getting and keep going constantly, but only producing pitiful wastage! I feel a bit better than I did this morning. I just found it weird I woke up in the night and released this nasty yellow stuff!

I'm not sure if I want to say 'yay - go you' or 'oh no, that's awful!'. I'm not sure what you prefer the D or the C, seeing as there is no in between for us folk! But at least you're not all bunged up now. :) I hope you're feeling alright!

@Wildmtnhoney - Wow, you are in the wars aren't you! That is a lot of testing and pain to go through. I am so sorry to hear you are going through all of this and have done for such a long time. I am truly hoping that this new doctor can give you a hand. I can imagine he will want to repeat a lot of the stool tests and blood tests, and probably have a look for himself. May I ask how old you are? There is most certainly something going on. Have you ever had tests for other auto-immune diseases such as Lupus?

What is interesting in correlation to my own testing, is I also had the CRP tests and came back with a 0.2 reading for coeliac's and my calproctectin test came back really low too. The only weird 'abnormality' I ever had was a slightly low lymphocyte WBC count, but apparently that was normal in a 'young, fertile female' (which was pretty patronising!). I have yet to have any colonoscopies.
 
Wildmtn, so it sounds like this all started with c diff and the hardcore antibiotics that they use to treat it? I wonder if you'd benefit from FMT (fecal microbiota transplant). You may want to look into it. It's possible that the c diff and antiobiotics messed up your gut flora, and it's really difficult if not impossible to get your "good" bacteria to repopulate again on their own after an event like that. FMT can help restore the balance of good bacteria in your gut. It of course won't "cure" things like the diverticulitis, but it could help with the diarrhea. Might be something to ask Dr. House about.
 
Kelleh, yes, "oily" stools indicate undigested fat - when fat is heated (like from body heat), it turns into an oil. I would wager it probably has something to do with the cookie dough pizza (is that cookie dough on a pizza?) and the lactulose probably as well, as that's going to speed up your transit time and things won't have as much time to break down.

Oh yes, nuts and seeds are very hard to break down! You may want to switch to smooth nut butters or nut milks (almond milk, cashew milk, etc). I cannot do nuts or seeds at all. I always have to ask for no sesame seeds when I go out for Chinese/Japanese/Korean food - those type of restaurants all seem to love sprinkling sesame seeds on every dish, but I can't handle them. They go through me undigested, it feels like they're scraping my guts all the way through, and then they go "plink-plink-plink" into the toilet as I poo them out whole. :p

Yeah, I guess I prefer d to c - with c, it is nice in theory to not "go" for a day or more, but I can definitely feel it all building up and it gets crampy and feels prickly and I start to feel like my insides are full and going to burst. With d, I'm used to it and at least things are moving along, like you said, so yeah. I guess d is better although neither is particularly a joy.
 
@Cat - Basically the 'pizza' was a cookie dough base, with lots of naughty chocolate brownies on top, marshmallows, more cookies and chocolate sauce - oh, and not to forget, ice cream on top of this too. I'm not sure if fructose malabsorption causes this sort of side effect, because there was definitely some corn syrup and fructose in that lot. I asked my friends who also ate it with me if they had any pain from eating it - but nope, only moi! With Lactulose, my doctor said it would just make my stool softer, but would not cause any urgency - so, I'm guessing he was right - just failed to tell me it was going to make my transit time a hell of a lot quicker. It's either that, or maybe I did just eat too much of lactose based items or gluten, although I have been tested for coeliac's, so high chance it was not gluten.

Oh, yuck! I know that feeling, exactly the same with me (hence the yuck, because I notice it too!), and with peas even if I manage to chew them?! So, maybe I am going to have to revert back to the white bread thing I was doing. Possibly need to do a low-residue diet for the time being. It seemed to help me out a little bit last time I tried it.

Nope, both suck! But I think I prefer going too, unfortunately. Although being awakened is not the nicest. :(

Ugh, I'm hungry. All I have to be offered is a bunch of chocolate bars or sweets.
 
That cookie dough concoction would have KILLED me kellehbeans :D I can't eat seeds at all either. I can't even eat berries that have seeds in them or I just get soooo sick right away.
 
It's apparently killed me too! Funny thing is, I'd quite happily eat it again. Right NOW. My stomach seems to have settled, although I am very hungry. I'll just have to wait until dinner time, our vending machine sucks at work.

Oh, I'm OK with seeds in berries (e.g. strawberries), but I am NOT OK with eating apples, plums, peaches and nectarines, at all. But for different reasons than seeds!
 
That cookie dough pizza does indeed sound pretty horrifying! It would definitely do a number on me as well. It sounds like you need to examine your diet, have you ever tried anything like an elimination diet? That could help you figure out what specific food triggers you have. A food diary might also be a good idea. At any rate, if it were me, I'd be eating much more simply - low residue always works well for me. Things like white rice, plain pasta, white bread, baked chicken, eggs, etc. Things that are easy to digest, bland and plain. Maybe try that for a bit and see if it helps. And pack a lunch for work! Don't rely on vending machines, they offer nothing but heartburn and pain. ;)

The way you described yourself with peas, that's me with strawberries! I swear, I chew them well, but it's like they re-form into whole strawberries in my gut and come out whole. :p Sometimes tomatoes do that as well. Oh, and certain mushrooms do also, particularly shitake mushrooms (seriously, with a name like that, I should have expected it, ha ha!). I'm okay with all other berries besides strawberries, oddly enough. I can devour raspberries, blackberries, blueberries endlessly. Blueberries do change the color of my stool, but they don't come out whole. Grapes are weird - I can digest everything but the skins. At one point, I ate a bunch of grapes and then had a rough time on the toilet like a day later. It looked like I was pooing out a bunch of contact lenses! It took me a minute to realize they were grape skins. :p Seriously, for a minute, I was like, I didn't eat contact lenses... right? Hah.
 
Definitely examined my diet, I'm just too stubborn, because every time I slip up I feel like a failure. Getting over that now though. Just need to stock up on friendly foods. I always pack own lunches.. Was just peckish! Kept away anyway, told myself NO SNACKING!!! Haha. Low residue is going to happen again I think. I feel a bit feverish ATM and I'm meant to be helping with a volunteer group which I want to give up...

Strawberries and peas are exactly the same for me! I hope you don't eat contact lenses anyway! [emoji16]
 
Okay so I snuck an extra mid-day Omeprazole today (naughty me) and it makes a world of difference, which again tells me that a large part of what I have going on here is really really bad reflux.
 
I didn't know omeprazole worked that quickly? I could be wrong, I was just told I had to take it and it'd take effect eventually over a course over a few days
 
Then at least it's done something! :D As I said, I can't be too sure, but I didn't know it could work so quickly! You shouldn't really self-prescribe, but you may want to tell the doctors you've done so and it has made you feel better! Maybe they'll think twice.
 
I'm not intending on making it a habit or anything, hopefully they'll see reason and prescribe a higher dose or a different medication that works better or something, but I just wanted to give it a go since I've been so damn miserable.

Getting something to raise my bed with too. Haven't had much trouble while sleeping before but last night I couldn't lay down at all, had to sleep propped up against the wall :p
 
Oh no! That's awful! I'm sorry to hear that, definitely prop your head up correctly, lots of things on the Internet to help GERD during the night!
 
I am giggling about grape skins and berries reforming - I have had the exact issue with peas and sometimes berries, other times not. Mushrooms are good with me (although, they are off limits on the FODMAP diet!). But, last night I had some fake licorice w/dye in it...OMG the COLORS of the D today!! I tend to forget what artificial dyes do since I don't eat them all the time. This clearly had blue and GREEN! LOL

In other news, the new dr's office called and I see him first thing tomorrow morning! I'm so amazed that they scheduled me this quickly! I am frantically trying to find my old printer, though, because we're out of toner in the "good" printer, and I'm in no shape to head out and more right now, and I really want to print out my labs and such to take with me tomorrow.
 
@Wildmtnhoney Wow that IS fast, congrats! Hopefully the new doctor will prove to be helpful! Keeping my fingers crossed for you.

--

I feel bad for my poor mother. She worries about me something fierce, and tries to help me and takes me to the doctor and I know it stresses her out. She has her elderly (and sick) parents to worry about, and her partner recently got diagnosed with pretty bad bouts of vertigo, and I know it must be a lot to handle. I really don't want to be a burden, but at the same time I both need and am grateful for the support. She told me today that she's having trouble at work because she has so much to take care of at home and with everyone else's problems, that she might have to go on sick leave just to manage. Which is horrible! And makes me feel horrible.

Those with GERD/experience with PPIs - do you know if you build up a tolerance to these kinds of medications? Because today, with my sneaky "extra pill" experiment, I do feel better. Not 100%, but it's an improvement, and it's the same way I felt at first when they upped my dose the last time. And I'm just wondering if I'm going down a slippery slope and even a higher dose will prove useless down the line so I should ask for something else to try, or what.
 
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It's my understanding that omeprazole takes a few days to build up in your system, but after that then it's effectively "on board" as long as you continue to take your pills, so I could see how taking an extra one could help immediately - I don't think it'd need to take a few days like the initial doses of it do. I don't think it's a placebo effect as I've experienced the same thing myself, taking an extra omeprazole really does help right away. :)

I have a chaise lounge for those times when I feel the need to sleep sitting up. It's comfy enough that I can sleep in it but it also keeps me upright enough.

Kelleh, I definitely don't eat contact lenses, ha ha! But I do take medication to help me sleep (amitriptyline), and you know how some sleep meds make you sleepwalk and sometimes eat weird things while sleepwalking and you don't remember? :p That was all I could think until I remembered the grapes, ha ha! And even that's not a good explanation because I don't believe I've ever sleep-walked (slept-walked?) on amitriptyline. It doesn't have that as a listed side effect, it just basically makes you drowsy. So yeah, I definitely did not eat contact lenses! I'm a glasses wearer anyway. (I do have a few old pairs of contacts in a closet though.) But seriously. Grape skins look JUST like contact lenses. :p

Wildmtn, I'm with you today on the funky colors! I had some cereal yesterday that was funky colors and today my poo is a rather vivid green. Food coloring definitely has that effect on me. Also recently my hubby brought home from work some cupcakes that had neon blue frosting. We both ate some. The next day, I sent hubby a rather urgent text saying, "Um, is your poo neon colored today? Was it the cupcakes?" He responded, "Ohhhh yeah." :p So I guess that even happens to healthy people because my hubby has guts of steel.

Izzie, my heart goes out to your mother. I've dealt with horrible vertigo so I know how awful that can be, for caregiver and patient (my hubby had to carry me to the bathroom multiple times a day as I was so bad I couldn't get there myself without falling and/or vomiting).

As for your question - yes, you can build up a tolerance to PPIs. I was on 20 mg omeprazole for awhile, it stopped working as well, then my GI put me on 40 mg. After awhile that stopped working as well, too. I've been on 40 mg Nexium (esomeprazole) for quite awhile now and fortunately that's still working pretty well. My GI did say, that the resistance goes down after awhile as well - meaning, I could probably go back on omeprazole now and it'd work great again (for awhile). So switching meds (and switching back again) could be beneficial to you.
 
That's good news, I think that's what's happened here. I felt pretty good for a while there on my 40 mg, but now my reflux is back full force. I'd rather switch than increase the dose further though, I think.

I have Ranitidine as an option as well but from my understanding it wouldn't be as effective.

Have you noticed any difference between brand name and generic versions of the same medication?
 
Sorry for the double post but had one more question: Gaviscon - thoughts? Was at the pharmacy today and was recommended it. Just tried it for the first time now - I got the pill form and wow - very gross to chew. Got all foamy and stuck in my teeth. Just hoping it has some kind of effect because I am DESPERATE the burning is so bad.
 
Izzie - Gaviscon is probably the best antacid tablet you can get. Again, I prefer it as the fluid (Gaviscon do the fluid I buy and swear by). They are very gross to chew, but they do their job, and another reason why I prefer the oral suspension!

Cat - Despite this conversation about grapes being weird, I really want grapes now! I bought cherries though, so that'll suffice.

I am in so much pain today. Still passing the yellow 'oil'. Requested a call back, but unfortunately, the doctor this morning is the one that claims I either have IBS or a virus. So, let's see how this goes.
I have started to think that it is not the Pred that is doing this to me, but rather the lactulose.
 
Wildmtnhoney said:
I am giggling about grape skins and berries reforming - I have had the exact issue with peas and sometimes berries, other times not. Mushrooms are good with me (although, they are off limits on the FODMAP diet!). But, last night I had some fake licorice w/dye in it...OMG the COLORS of the D today!! I tend to forget what artificial dyes do since I don't eat them all the time. This clearly had blue and GREEN! LOL

In other news, the new dr's office called and I see him first thing tomorrow morning! I'm so amazed that they scheduled me this quickly! I am frantically trying to find my old printer, though, because we're out of toner in the "good" printer, and I'm in no shape to head out and more right now, and I really want to print out my labs and such to take with me tomorrow.
Click to expand...

Sorry for double post but I've only just seen this! WOW - that is quick!! How are you finding the LOW-FODMAP diet by the way? Did the doctor set you on this or did you find it yourself? I found it extremely tricky.
 
Hi all,

I'm sorry to read how much you are all suffering without any answers. The only possible advice I can give (as even though i thought i was an expert on stomachs you guys surpass me at every level) is to really try the FODMAP diet for a minimum of a month. Its pricey and a pain, but you do get used to it. I can't say that it greatly helped with my stomach aches but what it definitely did was help with the diarrhea 95%. And even if though it doesn't rid you of the pain necessarily it reduced the anxiety of toilet troubles-which used to plague me daily-especially as the place i work only has one toilet. The struggles.

Hope you all feel better soon xx
 
Megan - The FODMAP diet is good if you want to eliminate any bad things that do cause IBS symptoms - but aren't actually IBS-related.

Personally, I have just been diagnosed with fructose-malabsorption! I'm getting somewhere! *dances*
 

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