Undiagnosed Club Support Group

[kellehbeans]

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

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

That is awful! I don't understand how things can get so bad before anybody notices.

I'll go in and ask my doctor about those things and see what she says - thanks!

 

[gadgetninjette91]

The fact they are seeing narrowings, that should be a sign, right? To me, it doesn't sound like you should be undiagnosed, especially not piled off as IBS. I hope things get better for you, this must be horrific for you. I've never heard of torturous colon before though!

I would imagine so. I gave the pictures a careful look last night, there were numbers that corresponded to the area of the colon that was affected. The upper corners seem the most narrow to me but there are other points on the way down that also look squeezed but on the opposite side of the terminal ileum. Upper corners could very well mean my jejunum is squeezing my colon now. I was super out of it when the doctor was talking to me after my scope, but my mom said he thought it was a big problem. Only things I found online about tortuous colon is that it's usually the result of years of chronic constipation. Definitely not like me at all. It's hard to find any information about jejunal Crohn's in the first place because of how uncommon it is so I assume my doctor would know more about my situation than the Internet would. That and my colon was completely unremarkable six months ago but I had marked inflammation in my ileum with a biopsy that looked Crohn's-like enough to my previous doctor to get me put on meds for it. Like I said, I think the meds have helped me down there but not up top. But I think you're absolutely right to say that I can't be written off at this point as only having IBS. Losing 43 pounds, the original scans/biopsy, and the CT findings cannot be written off. My best guess is he'll want more small intestinal imaging to see what's going on up top. Have not had a small bowel follow through which from what I understand involves barium, maybe that will shed some light on why my colon is suddenly so squeezed.

 

[kellehbeans]

@gadget - gosh. I did read about the torturous colon after you mentioned it. It could be a big problem if you do have inflammation - I can only imagine anyway. If it's happened so quickly in 6 months too, something is definitely going wrong. Keep us updated. Didn't you say you were on Colitis only meds anyway, so that'd explain why in lower areas you're a bit better than on top - if you get what I'm saying.

Jejunal is definitely hard to find. I was trying to learn more about it.

 

[Izzie]

You've all posted some really interesting stuff actually, I'm going into full research mode here.

For me it's suuuuch a fine line between insisting on treatment/more tests etc. and just straight-up health anxiety? Because I've had that, and I'm aware I've had that, and I also definitely do believe that stress is a factor in physical illness, absolutely. I'm in no way in denial about my mental health history and I know it's a factor in everything I deal with, even when it's not at all the cause.

It's an odd situation to be in - having actually dealt with very real stress and anxiety and all that, and then also becoming physically ill. And not always knowing yourself where the line is drawn between getting worked up over small things and hey, I'm really sick right now, especially when other people constantly question you.

I try to take comfort in the fact that I've had plenty of tests and none of them show anything immediately alarming. Other than my symptoms of pain/fatigue/belching/changed bathroom habits, the only concerning thing test-wise has been my anemia, one possible occult blood test, and that I've visibly seen black stool on a handful of occasions.

But then I can also end up in the mindset of "they're missing things!" and then I just get anxious and impossible.

I'm trying to just chill until my move so I can recharge a little. I feel reasonably stable at the moment at least - a lot of gas, nausea, heartburn and some twinges and tugs of pain here and there, but I don't feel like a walking zombie anymore, I can function. And I do think that must have something to do with the PPIs I'm on, which again makes me think that SOMETHING is happening with ulcers or acid reflux or something to that effect, or I don't see why/how it would help. Yeah, as always any insight is welcome.

I'm actually really curious how those of you who have lived with an undiagnosed condition for a long time deal with it? Because I've found I can't let it take up all my attention and if I'm going to remain undiagnosed for a reasonably long time then I need to find some kind of balance between continuing to try and find answers but also live some kind of life. I mean I'm in college, I can't just put my life on hold.

(sorry for this massively long post by the way, I'm wordy)

 

[kellehbeans]

You've all posted some really interesting stuff actually, I'm going into full research mode here.

For me it's suuuuch a fine line between insisting on treatment/more tests etc. and just straight-up health anxiety? Because I've had that, and I'm aware I've had that, and I also definitely do believe that stress is a factor in physical illness, absolutely. I'm in no way in denial about my mental health history and I know it's a factor in everything I deal with, even when it's not at all the cause.

It's an odd situation to be in - having actually dealt with very real stress and anxiety and all that, and then also becoming physically ill. And not always knowing yourself where the line is drawn between getting worked up over small things and hey, I'm really sick right now, especially when other people constantly question you.

I try to take comfort in the fact that I've had plenty of tests and none of them show anything immediately alarming. Other than my symptoms of pain/fatigue/belching/changed bathroom habits, the only concerning thing test-wise has been my anemia, one possible occult blood test, and that I've visibly seen black stool on a handful of occasions.

But then I can also end up in the mindset of "they're missing things!" and then I just get anxious and impossible.

I'm trying to just chill until my move so I can recharge a little. I feel reasonably stable at the moment at least - a lot of gas, nausea, heartburn and some twinges and tugs of pain here and there, but I don't feel like a walking zombie anymore, I can function. And I do think that must have something to do with the PPIs I'm on, which again makes me think that SOMETHING is happening with ulcers or acid reflux or something to that effect, or I don't see why/how it would help. Yeah, as always any insight is welcome.

I'm actually really curious how those of you who have lived with an undiagnosed condition for a long time deal with it? Because I've found I can't let it take up all my attention and if I'm going to remain undiagnosed for a reasonably long time then I need to find some kind of balance between continuing to try and find answers but also live some kind of life. I mean I'm in college, I can't just put my life on hold.

(sorry for this massively long post by the way, I'm wordy)

Izzie, that was not a massively long post, and I'm glad you've been able to get this off of your chest.

I start to wonder myself if it's a fine line between anxiety with me too - but I decide to try and not believe this as I have got 100x better. I was diagnosed with anxiety last year (I did not even know I was a textbook case for it, but now I realise when I am anxious!), depression 10 years ago and an eating disorder 10 years ago. It is an odd situation becoming suddenly physically ill, as I desperately needed to get better and not need therapy because of the amount of hospital visits I needed, balanced with work.

I have nothing alarming either, I have the pain, the fatigue, the belching, and I have major acid reflux and now heartburn and indigestion bouts.

To be honest, dealing with it is just learning your own body and trying to work out what foods trigger your pain, trigger any other symptoms and just taking it from there until you can get down to the bottom. Even when you do get to the bottom of all of this, you are going to need to those things you learned so you do not flare or make yourself ill again.

 

[Izzie]

I think doctors fail to respect that patients who have dealt with any kind of mental unhealth for a long time and/or have had it treated in therapy etc. - usually know their problems?

There's a huuuuge difference between me being anxious because I'm sick, and being sick because I'm anxious, and I'm confident in my ability to tell the difference. Especially since before I was sick, I wasn't feeling particularly anxious anymore.

And yes, kellehbeans, missing work/school is a real problem for me too atm.

 

[kellehbeans]

I think doctors fail to respect that patients who have dealt with any kind of mental unhealth for a long time and/or have had it treated in therapy etc. - usually know their problems?

There's a huuuuge difference between me being anxious because I'm sick, and being sick because I'm anxious, and I'm confident in my ability to tell the difference. Especially since before I was sick, I wasn't feeling particularly anxious anymore.

And yes, kellehbeans, missing work/school is a real problem for me too atm.

Yes, I totally agree. Also, I totally feel the same about how we can tell the difference between being anxious from being ill and ill from being anxious! Sending big hugs your way. School must be a really hard place to have all of this going on at the same time.

 

[kellehbeans]

Argh, not sure if hives are anything to do with IBD, but these last two days, I scratch myself gently and the mark stays ages... had a bag on my arm for 10 mins, left a rash for 2 hours, and actual proper 'nettle rashes' between my knuckles and also on my stomach where the pain was yesterday! Argh. Anybody else have this and if you do how, do you soothe the skin? Not sure if it's anything to do with IBD.

 

[Lorikeetie]

Hi all, I got my GI to let me try pentasa a couple of years ago even though I don't have a crohns diagnosis. Had another round of tests (colonoscopy and pillcam) which of course came back without evidence of crohns (although there was non specific inflammation on the colonoscopy this time). Asked if I should keep taking pentasa or not (had been feeling great on it).

GI said to stop and watch. Stopped it 3 months ago and since then my CRP and ESR increased a little more each month and haemoglobin dropped (almost anaemic). Diarrhoea and abdominal pain have increased too, but not as terrible as it has been I the past. Have terrible fatigue though. Started methotrexate for my joints at the same time as I stopped pentasa (maybe side effects??) Had another MRI and my sacroillitis is suppressed at the moment so that leaves me thinking it could be inflammation in my gut?? I don't get why my inflammatory markers have increased despite taking a immunosuppressant.

Think I might contact GI and let him know I feel a bit horrible again, but I feel like I am crazy keeping going on that I think I have IBD and he keeps telling me it's IBS.

 

[UnXmas]

I'm actually really curious how those of you who have lived with an undiagnosed condition for a long time deal with it? Because I've found I can't let it take up all my attention and if I'm going to remain undiagnosed for a reasonably long time then I need to find some kind of balance between continuing to try and find answers but also live some kind of life. I mean I'm in college, I can't just put my life on hold.

I have a few different health problems. One is incredibly rare, and took over a decade to diagnose. In a way diagnosis was an anticlimax. Ironically, I'd recently come to accept never knowing when I was diagnosed. I don't like naming it on a public forum, because I'm paranoid my doctors or people I know would recognise me and start reading my posts. Getting diagnosed made me realise why self-diagnosing is useless. No matter how much I searched online, there's no way I could have correctly diagnosed myself. But it was an anticlimax in that I still get accused of faking and mental illness.

 

[Izzie]

Argh, not sure if hives are anything to do with IBD, but these last two days, I scratch myself gently and the mark stays ages... had a bag on my arm for 10 mins, left a rash for 2 hours, and actual proper 'nettle rashes' between my knuckles and also on my stomach where the pain was yesterday! Argh. Anybody else have this and if you do how, do you soothe the skin? Not sure if it's anything to do with IBD.

I get that sometimes, I have suuuuper sensitive skin. If you've changed soaps/laundry detergents/fabric softener lately that'd be my first guess.

My usual remedy is cortisone cream + an OTC allergy pill of some kind.

That's one of my actual health problems that I DO associate with stress, I tend to get hives when I'm really wound up for whatever reason. Check with your doctor though, I don't know if it could be IBD-related either, but even if it isn't it could be an allergy or something.

 

[kellehbeans]

I have a few different health problems. One is incredibly rare, and took over a decade to diagnose. In a way diagnosis was an anticlimax. Ironically, I'd recently come to accept never knowing when I was diagnosed. I don't like naming it on a public forum, because I'm paranoid my doctors or people I know would recognise me and start reading my posts. Getting diagnosed made me realise why self-diagnosing is useless. No matter how much I searched online, there's no way I could have correctly diagnosed myself. But it was an anticlimax in that I still get accused of faking and mental illness.

Faking and a mental illness? Who would accuse you of that? That's absolutely awful, I'm sorry to hear that.

@Izzie - I've taken some anti-histamines! My sister actually also gets it, and I asked her how she deals with it, and she just told me to use those and it hasn't really helped - but she said that it may be something to do with stress or worry - as that what triggers her off. It's funny, we're the only ones in the entire family that suffer with it.

 

[Izzie]

Faking and a mental illness? Who would accuse you of that? That's absolutely awful, I'm sorry to hear that.

@Izzie - I've taken some anti-histamines! My sister actually also gets it, and I asked her how she deals with it, and she just told me to use those and it hasn't really helped - but she said that it may be something to do with stress or worry - as that what triggers her off. It's funny, we're the only ones in the entire family that suffer with it.

Might take a couple days for it to really ease up. I find that cortisone cream really helps get any hives/rashes under control even quicker.

 

[UnXmas]

Faking and a mental illness? Who would accuse you of that? That's absolutely awful, I'm sorry to hear that.

Objective test results don't show enough wrong with my digestive system to justify the extent of my weight loss, so the gastroenterologist thinks I have an eating disorder and am losing weight deliberately. And I find that the more I eat, the worse my digestive symptoms get, but she insists that it's that when I eat more, I get more stressed, and stress makes my digestive symptoms worse. My interactions with this gastroenterologist were long and complicated though. Somewhere on the forum I have a thread about it.

 

[kellehbeans]

Objective test results don't show enough wrong with my digestive system to justify the extent of my weight loss, so the gastroenterologist thinks I have an eating disorder and am losing weight deliberately. And I find that the more I eat, the worse my digestive symptoms get, but she insists that it's that when I eat more, I get more stressed, and stress makes my digestive symptoms worse. My interactions with this gastroenterologist were long and complicated though. Somewhere on the forum I have a thread about it.

Wow, that's absolutely awful! I don't believe that for one second. Do you have a link to it?

 

[UnXmas]

Posts begin around the end of page one in this thread: http://www.crohnsforum.com/showthread.php?t=67126

 

[kellehbeans]

Oh my god, I just sat and read the whole thing. That is simply terrible - that woman sounded like a jobs worth!!! I'm sorry to read you went through all of that. Sending hugs your way.

 

[mrsbrace]

Can I join please had symptoms since end of March and currently waiting fir consultant appoint and referral for colonoscopy

 

[Cat-a-Tonic]

Hi Mrsbrace, of course, welcome to the club and the forum. Sorry you had to join us but glad you found us! Good luck with your appointment and colonoscopy, please keep us posted on how they go.

 

[kellehbeans]

Can I join please had symptoms since end of March and currently waiting fir consultant appoint and referral for colonoscopy

Good luck, let us know when you get your referral!

 

[mrsbrace]

its next monday

 

[lsgs]

Hi guys :thumleft:

How is everyone?

 

[Cat-a-Tonic]

Hi lsgs! I'm doing okay, I think I'm back in remission and having mostly good days lately. How have you been doing? Any news on your health situation(s)?

Edited to add: lsgs, I forgot to tell you - I finally got a road bike! I know you are/were an avid cyclist so I know you'll appreciate that. It's not the easiest on my guts but it's really fun to ride. I just got it a few months ago and so far I really like it! Do you still ride these days or is your health being too much of an issue right now for you to be able to ride?

 

[Izzie]

Hey all!
Quick question: what counts as a "normal" blood iron level? I can't really determine whether my anemia is severe or just moderate. Last test was at 109, which apparently counts as anemic, but I can't determmine how severe.

I've tried googling it but I must be experiencing some kind of brain fog today because I just can't seem to find anything helpful.

ETA: Starting iron pills tomorrow. Which should help with the fatigue and all, but I'm still a bit miffed that they're treating the anemia without having found a cause for it.

 

[Cat-a-Tonic]

Izzie, I'm currently anemic thanks to a recent month-long bout of rectal bleeding (yay hemorrhoids). I just had bloodwork done earlier this month. I'm pasting my results below (not sure if it's all going to line up properly but here goes).

Component | Standard Range | Your Value
Iron | 50 - 160 mcg/dL | 43
Fe Binding Cap | 250 - 450 mcg/dL | 577
Saturation | 16 - 50 % | 7

I'm never quite sure how to read these things but it looks to me like I'm mildly/moderately anemic. It looks like my iron is at 43 when it should be at least 50. You're in the UK, correct? You guys must use different measurements over there if yours was 109 and you're anemic? I'm not sure what mcg/dL means (micrograms per decileter maybe?). Anyway, I realize this is all largely unhelpful, but for what it's worth that's my result. I bled for a month straight during March and I apparently haven't recovered from that yet. I don't take any iron supplements (they all seem to cause me stomach pain and/or nausea). I don't eat red meat so I'm sure that has affected my ability to get my blood iron levels back up. Sorry I can't be more helpful!

I am tagging StarGirrrrl here as she's dealt with severe anemia and may be able to be more helpful than I am (she's in the UK as well).

 

[Izzie]

Izzie, I'm currently anemic thanks to a recent month-long bout of rectal bleeding (yay hemorrhoids). I just had bloodwork done earlier this month. I'm pasting my results below (not sure if it's all going to line up properly but here goes).

Component | Standard Range | Your Value
Iron | 50 - 160 mcg/dL | 43
Fe Binding Cap | 250 - 450 mcg/dL | 577
Saturation | 16 - 50 % | 7

I'm never quite sure how to read these things but it looks to me like I'm mildly/moderately anemic. It looks like my iron is at 43 when it should be at least 50. You're in the UK, correct? You guys must use different measurements over there if yours was 109 and you're anemic? I'm not sure what mcg/dL means (micrograms per decileter maybe?). Anyway, I realize this is all largely unhelpful, but for what it's worth that's my result. I bled for a month straight during March and I apparently haven't recovered from that yet. I don't take any iron supplements (they all seem to cause me stomach pain and/or nausea). I don't eat red meat so I'm sure that has affected my ability to get my blood iron levels back up. Sorry I can't be more helpful!

I am tagging StarGirrrrl here as she's dealt with severe anemia and may be able to be more helpful than I am (she's in the UK as well).

Scandinavia, actually!

Ended up calling a friend of mine since I wasn't making sense of it. According to her it's grams per litre here? I'm not good with math. Apparently a normal range with this measurement is 120-150 for women. So, I mean, I guess it could be worse. The latest results came after my freak accident of bleeding from my arm all over a public bathroom after having blood samples taken, so I'm sure that contributed to the sudden drop as well as the latest bout of GI bleeding...

I'm trying to figure out if I even need the iron supplement, as I've also heard that they can upset your stomach quite fiercly.

 

[Cat-a-Tonic]

Oh, sorry! I tend to forget where everyone is from if it's not listed in your profile. Yes, iron supplements can often cause stomach upset. I tried some iron supplements that are supposed to be easier on your stomach, but even those upset me to the point that I discontinued using them. I have heard that there are liquid iron supplements that are supposedly easier on the stomach, but those are expensive and I haven't tried them due to the cost. You also may be able to get iron injections/infusions. I haven't had those myself either but it might be worth looking into - since the stomach is bypassed with the injections, theoretically those might actually truly not cause stomach upset. Or, since your anemia doesn't sound like it's severe, you could just try to get more dietary sources of iron (that's what I'm doing). If you eat red meat then try having a bit more of that, and I believe spinach is also a good source - I can have spinach if it's cooked or juiced. I also try to cook with a cast iron skillet when I can, as that supposedly also helps.

 

[lsgs]

Hi lsgs! I'm doing okay, I think I'm back in remission and having mostly good days lately. How have you been doing? Any news on your health situation(s)?

Edited to add: lsgs, I forgot to tell you - I finally got a road bike! I know you are/were an avid cyclist so I know you'll appreciate that. It's not the easiest on my guts but it's really fun to ride. I just got it a few months ago and so far I really like it! Do you still ride these days or is your health being too much of an issue right now for you to be able to ride?

That's really good to hear Cat! I'm so glad you're in remission, did you get medication to help? How are your joints doing?

I've had sort of major developments health related. They told me I had lymphoma. I had two needle biopsies done via endoscope. The first was a horrible experience and didn't work so I needed it done again. In the end they came back reactive and the gastro who did them told me - sometimes we see this type of lymph node in crohns! But by the way, we looked at your scan from 3 years ago and it was there, it was just missed at the time. This pretty much eliminated the chances of it being cancer, so it was over 6 months of stressing and thinking I had cancer for nothing - words cannot explain how cross I am! I was told to prepare for chemo and radiotherapy!

Anyway I had my gallbladder out in March, and at the same time they did a liver biopsy and a lymph node excision (not the big one, that's too dangerous to get to). The lymph node was reactive so NO CANCER! :dusty: The liver biopsy showed sarcoidosis or primary biliary cirrhosis. I had a complication after of bile gastritis which thankfully is being successfully treated but did land me in hospital on a drip and morphine - yuck!! Having my gallbladder out has given me SO MUCH pain relief!!! It's a big weight off my shoulders that I'm not having any more midnight trips to hospital.

Unfortunately for me the best liver doctor is the one who told me years ago all my problems were psychological. He has started me on medication for PBC but won't diagnose it - eugh! He says my liver enzymes don't match exactly. So he sent me to the sarcoidosis doctor and although one of my enzymes was raised for sarcoidosis he said can't prove I have it, but he equally can't disprove it. Ground glass appearance in CT lungs is just the way I'm lying? I am now being told that a biopsy is non specific. I thought a biopsy was about the most specific thing you could do. The end result is I still have no answer for why I have gigantic lymph nodes.

In the meantime I've had a pretty major flare up of my bowel condition. My calprotectin is elevated again. Doctors are doing.... nothing! The rheumatologist who treated me for IBD has retired. So I'm stuck. So I've just re-ordered LDN and I'm going to try to get into a good healthy remission again. I've not lost hope yet.

On the subject of road bikes, it will become an addiction soon! To me it's like therapy, it keeps me sane. If I had to give up again it would be a sad day for me. I think you get the same sort of thing from exercise? I totally agree that the posture of a road bike is not great for gut issues, particularly reflux and I think it puts more pressure on the abdomen, but I just love riding drop bar bikes. I am still riding these days but doing distances up to 20 miles. What sort of bike did you get? Do you have a picture?

 

[Cat-a-Tonic]

lsgs, holy cow, what a crazy time you've had! I'm really, really, REALLY glad it's not cancer though! Glad they figured that out before putting you through chemo and radiation! I hope you can get the liver stuff figured out. Are there other liver doctors in your area besides the one you saw? Surely you could take the biopsy results to someone else and get a 2nd opinion? I also hope the LDN works great for you this time around - I seem to recall that it worked really well for you in the past, right?

Yeah, I was on Entocort for something like 8 months which seemed to get me back into remission. Currently just on Lialda for maintenance and doing okay for the most part. My joints are okay-ish. My bad hip has been giving me a bit of trouble lately - it's fine when I'm sitting, but walking is sometimes a bit painful and so is lying down in bed for some odd reason. Like last night, I felt fine, took a shower, got ready for bed, but when I laid down my hip suddenly started aching and I had a hard time finding a comfortable sleeping position. It's been rainy a lot lately so I hope it's just the weather that's been triggering my hip pain (snow can definitely trigger my pain, rain can at times). So who knows!

Yes, I'm the same with exercise. I refuse to give it up - I might have to slow down or stop temporarily for a week here or a month there, but I won't quit. It makes me feel SO good both physically and mentally. Being in the gym is basically the only time that I can forget for a little while that I'm a sick girl, in the gym I can kick ass and be healthy girl for a little while - it's almost like I become a super hero when I step into the gym. Weight lifting is my favorite but I love bike riding too, and it's fortunately easy on my hips (I can't jog nor do anything high-impact or my hips end up in tons of pain, but cycling is fine). My new road bike is a Takara Kabuto - it's a Japanese brand. It's a fairly basic "novice" road bike, it's a single gear and isn't super fancy (it's really pretty colors though, ha ha). I don't have a photo on this computer but here's a generic photo of the same type of bike that I found on google:

Isn't it pretty? I love the blue tires, ha ha. It's been a good bike for me to get into road biking. So far I have just ridden it around town and to the gym (my gym is something like 3.25 miles away, so not long rides - not long enough to trigger my GERD nor upset my guts). I have a cruiser/comfort bike as well so it's nice having options - if my guts are iffy and I want to sit more upright on my bike ride and/or go slower, I can ride my cruiser. If I want to go faster and I feel like my guts can handle being a bit crunched over, I ride the road bike.

 

[kellehbeans]

Woah, Cat! That is an absolutely gorgeous bike!!!!

Hey all (again). Has anybody ever experienced hard, grey stool that float (like, 4 out of 7 or something) but all the rest seems normal in the toilet? Think I should mention it to my doctor because I have it a couple of times a week, but I know she can't do anything! Argh! Hope everybody is doing ok!

 

[Cat-a-Tonic]

Kelleh, do mention it to your doctor. By grey, do you mean like light grey? Like, pale? Pale stools can mean a few different things, including gastritis, bile salt malabsorption, and gall bladder issues - your doctor can check for those things with various tests. Floating stools usually mean things aren't being absorbed properly, particularly fats. Have you changed your diet or eaten anything high in fat recently?

 

[kellehbeans]

They are pale, but all the pale ones float. They've checked my liver functioning before and it came back fine. I haven't eaten anything high in fat! It's been going on for a while now, just saw them in higher numbers today, so I knew something wasn't right!

 

[Cat-a-Tonic]

Do you have any upper abdominal pain? I get recurrent gastritis (inflammation of the stomach) due to my acid reflux issues - if my stomach acid starts bubbling out of control and I don't take any reflux meds to stop it, then the stomach acid apparently starts eating away at the lining of my stomach which causes inflammation and pain. That in turn causes me to have pale stools for some reason (not sure why). When I have a gastritis attack, the pain is always in the upper abdomen - about 2 inches above my belly button, and it's a pretty sharp pain. It's usually pretty central, not off to the left or right very much, just in the center and above the belly button. Do you have acid reflux or GERD? Do reflux medications help you at all?

At any rate, it sounds like it's bothering you and it's definitely not normal, so do tell your doctor about it. I hope they can figure it out!

 

[kellehbeans]

I am suspected GERD. Managed to control the acid reflux and heartburn today with diet, it's been awful all week. Sometimes I can't use antacids but majority of the time I can. I usually have pain, sharp which can be painful and last a few seconds or can last for hours, but that's more upper left!

 

[CharlieB]

`Hi everyone, I haven't been on here in a while but I hope you're all doing ok.
(I'm going to get a bit ranty here, you've been warned)
It's been a rough couple of weeks (months?) since I've posted, it seems like all I can do is barely make it through my shifts at work (I work in a book store so it's fairly low key, but I am on my feet all day) and then I come home and feel too fatigued to do much of anything. The fatigue and the near constant pain in my RLQ are really kind of getting to me.
Though on the positive side I do have an MRE scheduled for July 7th so maybe I will finally get some kind of answer as to why this is all happening, but in my current pessimistic mood I'm half convinced that they're not going to find anything wrong and I'll be in pain forever.
I think I'm also feeling pessimistic because I know a little too much about all the scary things that can happen with Crohn's disease (my sister has it rather severely). She's had many a surgery to remove severely diseased and strictured parts of her bowels and I'm freaking myself out with all the things that I know can happen.
Sorry I don't mean to be so negative, but I'm hoping you'll understand where I'm coming from, I'm just feeling so frustrated right now

 

[kellehbeans]

`Hi everyone, I haven't been on here in a while but I hope you're all doing ok.
(I'm going to get a bit ranty here, you've been warned)
It's been a rough couple of weeks (months?) since I've posted, it seems like all I can do is barely make it through my shifts at work (I work in a book store so it's fairly low key, but I am on my feet all day) and then I come home and feel too fatigued to do much of anything. The fatigue and the near constant pain in my RLQ are really kind of getting to me.
Though on the positive side I do have an MRE scheduled for July 7th so maybe I will finally get some kind of answer as to why this is all happening, but in my current pessimistic mood I'm half convinced that they're not going to find anything wrong and I'll be in pain forever.
I think I'm also feeling pessimistic because I know a little too much about all the scary things that can happen with Crohn's disease (my sister has it rather severely). She's had many a surgery to remove severely diseased and strictured parts of her bowels and I'm freaking myself out with all the things that I know can happen.
Sorry I don't mean to be so negative, but I'm hoping you'll understand where I'm coming from, I'm just feeling so frustrated right now

Hi Charlie,

Rant away! We all do it, and we DEFINITELY understand where you are coming from. Sending hugs your way.

Do not think you'll be in pain forever, they will find a way to attack that horrible pain and there will be a day where you will be ok! It's just this diagnosis process we all have to go through!

Keep us updated and hope you get the answers you are looking for soon. :hug:

 

[gadgetninjette91]

Very much want to strangle my nurse practitioner. She called me with the biopsy results which of course were negative so she tried to tell me I don't have Crohn's at all. I mentioned that I've been treated for Crohn's for the last two months and mentioned my previous biopsy and inflammation. She basically invalidated all of it, basically said, "Well you may have had a biopsy before and were treated for Crohn's, but your Crohn's biopsy was negative at this time." Prescribed me an antispasmodic which I highly doubt will help me as I'm not feeling cramps, more like pressure and popping and it's all in the upper part of my abdomen (jejunal area). After eating I get this hardened mass that spreads across the upper half of my abdomen and it's tender to the touch. I have a feeling that the nurse practitioner has no idea what she's talking about and that she had no access to my chart, may have never seen a case of jejunal Crohn's in her life, and likely had no idea that most of the inflammation was found up top. But I have a feeling the doctor himself is concerned, he changed my 15-minute follow-up appointment to a full 45-minute consult so I have a feeling he is more concerned than this bimbo on the phone was. Takes 15 minutes to tell someone there's nothing wrong with them, I highly doubt he would want to take a whole 45 minutes telling me there's absolutely nothing wrong with me. But I am very frustrated and feel extremely invalidated. I obviously responded to the meds both mucosally and symptomatically, noticed a 75-80% difference on Pentasa, it's just not perfect. How can this not be Crohn's? Confused, angry, still wanting to strangle my incompetent nurse practitioner who is probably just reading off of a paper and not looking at my chart.

 

[lsgs]

lsgs, holy cow, what a crazy time you've had! I'm really, really, REALLY glad it's not cancer though! Glad they figured that out before putting you through chemo and radiation! I hope you can get the liver stuff figured out. Are there other liver doctors in your area besides the one you saw? Surely you could take the biopsy results to someone else and get a 2nd opinion? I also hope the LDN works great for you this time around - I seem to recall that it worked really well for you in the past, right?

Yeah, I was on Entocort for something like 8 months which seemed to get me back into remission. Currently just on Lialda for maintenance and doing okay for the most part. My joints are okay-ish. My bad hip has been giving me a bit of trouble lately - it's fine when I'm sitting, but walking is sometimes a bit painful and so is lying down in bed for some odd reason. Like last night, I felt fine, took a shower, got ready for bed, but when I laid down my hip suddenly started aching and I had a hard time finding a comfortable sleeping position. It's been rainy a lot lately so I hope it's just the weather that's been triggering my hip pain (snow can definitely trigger my pain, rain can at times). So who knows!

Yes, I'm the same with exercise. I refuse to give it up - I might have to slow down or stop temporarily for a week here or a month there, but I won't quit. It makes me feel SO good both physically and mentally. Being in the gym is basically the only time that I can forget for a little while that I'm a sick girl, in the gym I can kick ass and be healthy girl for a little while - it's almost like I become a super hero when I step into the gym. Weight lifting is my favorite but I love bike riding too, and it's fortunately easy on my hips (I can't jog nor do anything high-impact or my hips end up in tons of pain, but cycling is fine). My new road bike is a Takara Kabuto - it's a Japanese brand. It's a fairly basic "novice" road bike, it's a single gear and isn't super fancy (it's really pretty colors though, ha ha). I don't have a photo on this computer but here's a generic photo of the same type of bike that I found on google:

Isn't it pretty? I love the blue tires, ha ha. It's been a good bike for me to get into road biking. So far I have just ridden it around town and to the gym (my gym is something like 3.25 miles away, so not long rides - not long enough to trigger my GERD nor upset my guts). I have a cruiser/comfort bike as well so it's nice having options - if my guts are iffy and I want to sit more upright on my bike ride and/or go slower, I can ride my cruiser. If I want to go faster and I feel like my guts can handle being a bit crunched over, I ride the road bike.

What an awesome bike! I'm not fit enough to ride singlespeed :ylol2: I love the bright colours. I don't know if it's our weather or what but all the bikes here are quite dull colours/black. One thing that helps is if you're feeling a bit scrunched up and it's safe to do so, ride on the tops for a little while. Obviously sometimes you're going to want to cover the brakes. I find it opens everything up and for me at least, can help with any abdo pain/reflux.

This is my old faithful, 2010 Specialized Secteur Comp. Upgraded the wheels.


This is my 'exploring' bike. It can pretty much go anywhere. 2014 Genesis Croix de Fer


See what I mean about black?! Haha

I've just been to see a personal trainer and he's going to help me start lifting weights - I hope I get as addicted as you! I love cycling but it doesn't do much for your muscles, just cardio, so want to be a bit more balanced.

LDN was great for me last time. No side effects and my ESR went from 51 to 26. I can't argue with that really. I had to come off as the gall bladder pain was too strong and I needed to take opiates, and it's taken me all this time to come out of remission. So I can't wait to get back on it, fingers crossed it has the same effect. My guts aren't so bad at the moment and I'm not losing weight right now, but still have pain and d and don't want things to get a lot worse.

I'm glad you're doing reasonably well. Does your GI still take you reasonably seriously? I'm just about done with doctors!

 

[Izzie]

Skipped my reflux meds for ONE day, since my doctor thinks all I have is IBS I figured I'd try.

Absolutely miserable now. Every other exhale is a belch, essentially. Anyone else with reflux have any good suggestions? I'm not too fond of the idea of being on PPIs forever but I apparently can't skip them for even a day. It seems to set off all my other symptoms too once it gets going...

 

[Cat-a-Tonic]

lsgs, your bikes are cool and look like they're very fast! Yeah, my fixed gear road bike definitely takes some getting used to and I admittedly don't take it out on many hills! I actually got my road bike for free - at work, if we do an exemplary job then we earn points that we can use to redeem for prizes. My boss awarded me with some points but most of the prize options were bad. The options were basically, ugly handbag, ugly handbag, ugly handbag, road bike. Hmm, of course I chose the road bike! I would WAY rather have a bike than a handbag, no question. There were actually a couple road bike options and that was the best one based on the amazon reviews that I read. So yeah, it's gorgeous but it's fixed gear. My cruiser bike does have 7 gears so if I'm planning on doing some hills, I tend to take the cruiser out instead.

Here's a photo of my cruiser bike - as you can see, I am drawn towards bikes that are pretty colors, ha ha. (Again, I don't have a photo of my bike on this computer as I'm at work, so this is from a google search. My actual cruiser bike has a few add-ons such as a basket on the front.)

And yes, on my road bike I do try to move my hands down the handlebars closer to myself so that I can sit more upright when I'm on a stretch of road or bike path where I know I won't have to brake for awhile. I've noticed that makes a big difference in how I feel during & after a ride. It is a bit scary to not have my hands near the brakes, but so far it hasn't been an issue.

Have fun with weight-lifting! Yes, it's my absolute favorite. I feel so powerful and strong and just plain healthy when I'm lifting weights. It's like the opposite feeling of being ill and weak all the time, being strong and amazing in the gym makes me feel like a superhero. My advice is to start out slowly with light weights to ease into it, and make sure to get your form right. Also don't overdo it on working your abdominal muscles, especially at first! Overworking my abs in the gym is my #1 reflux trigger (I also can't eat any food for at least 2 hours before lifting or I'll reflux to the point of vomiting, fun). I've actually had to stop working my abdominals altogether for awhile as it has been causing me a lot of symptoms lately (bathroom trips, nausea, just plain feeling awful, and sometimes can even trigger a bout of bleeding). So take it slowly at first and be kind to your abdominal area until you learn what you can and can't do.

Yes, my GI takes me reasonably seriously. He's very "by the book" so it's been a bit difficult at times as he wants to see hard evidence of my illness and so far that's been elusive, but he also has referred to what I have as "IBD" and he treats me as such, he prescribes Entocort for flares and Lialda for remission and doesn't try to put me on IBS meds anymore. He knows I'm kind of a pain in the ass, ha ha, so he usually caves and lets me have what I ask for or at least he'll compromise with me. Recently I had a flexi-sig to check on the source of my recent bleeding (just hemorrhoids, thank goodness) and the sedation ended up not working for me and I was apparently awake & talking the whole time, although I don't remember much and wasn't in any pain that I can recall - even so, right away he said that for all future scopes, I can have propofol (anesthesia) rather than sedation so that I'll be knocked out and more comfortable. He's learning, ha ha! That's the kind of thing I'd normally have to request/demand, so for him to be the one to suggest it, that's definite progress.

 

[Cat-a-Tonic]

Izzie, I feel for you! My GERD is severe and I can't skip even one day of reflux meds either. I wish I had some suggestions for you. Have you noticed anything that triggers your reflux or makes your symptoms worse? For me, anything with repeated bending over (such as shoveling snow or digging in the garden) can trigger a bad episode of reflux for me. Also anything to do with my abdominal muscles like crunches is a no-no. And certain foods, particularly fried foods and highly acidic foods (spaghetti sauce, orange juice) are also quite bad on my reflux (for some reason, cucumber also gives me terrible heartburn - not sure why that is!). Maybe keep a diary of what you're eating and what activities you're doing, and see if you can come up with any patterns. If it's particularly bad at night, try sleeping sitting upright if you're able to (I'm not able to sleep sitting upright so I know that's a difficult one). I hope that helps a little bit!

 

[Izzie]

Izzie, I feel for you! My GERD is severe and I can't skip even one day of reflux meds either. I wish I had some suggestions for you. Have you noticed anything that triggers your reflux or makes your symptoms worse? For me, anything with repeated bending over (such as shoveling snow or digging in the garden) can trigger a bad episode of reflux for me. Also anything to do with my abdominal muscles like crunches is a no-no. And certain foods, particularly fried foods and highly acidic foods (spaghetti sauce, orange juice) are also quite bad on my reflux (for some reason, cucumber also gives me terrible heartburn - not sure why that is!). Maybe keep a diary of what you're eating and what activities you're doing, and see if you can come up with any patterns. If it's particularly bad at night, try sleeping sitting upright if you're able to (I'm not able to sleep sitting upright so I know that's a difficult one). I hope that helps a little bit!

Food seems to be the big trigger for me. I rarely have problems if I don't eat much. Sleeping doesn't seem to be much of a problem unless I've already set my reflux off by eating something bad. Though I sometimes worry that my sleeping style (I'm a belly sleeper) is making things worse even though I feel okay.

Anything even remotely acidic is a big no for me. Also fat. I ate cheese and wanted to die at one point.

If not for the fact that my scopes have been clear I would've thought that this was the cause of my GI bleeding as well as it always seems to happen when the reflux is particularly bad too...

It's such a pain! I lose my voice constantly recently as well.

ETA: I'm also actually getting started lifting! I've been feeling so physically awful lately that I figure getting into some good habits can only help. If I manage to lose a couple lbs to boot it might improve my symptoms. Way nervous to go to the gym still, I used to be suuuuper active back in high school but lost it somewhat in college.

ETA again: Yupp, a day after severe reflux symptoms, and I am shitting blood, pardon my language. My doctor still says my reflux is just "false symptoms" caused by IBS. But then again that's what he's saying everything is Calling the guy tomorrow. One figures that if reflux meds help me, I have a hiatus hernia, and I get instantly worse when I skip the medication - I have reflux? No? *sigh* So sick of having to nag people to get any help.

 

[Cat-a-Tonic]

Izzie, your doctor sounds kind of awful - it sounds clear to me that you have reflux/GERD and it sounds like it's quite severe if you're losing your voice. With both that and the bleeding, it sounds to me like you need a 2nd opinion. My GI always takes bleeding seriously - even though my recent bleeding episodes were caused by hemorrhoids, he still did a flexi-sig to make sure that nothing else was going on and he's also been doing regular bloodwork on me to check on how anemic I am. Can you get a 2nd opinion from a new (better) doctor? Is this your GP or your GI who is blaming everything on supposed IBS?

Good luck with lifting weights! If you're feeling this awful, definitely start out really slowly. For me, I wasn't really able to get into exercise until I got into remission, so don't get frustrated if you find you're just not able to exercise properly right now. Take care of yourself, whether that means exercise or rest!

 

[Izzie]

Izzie, your doctor sounds kind of awful - it sounds clear to me that you have reflux/GERD and it sounds like it's quite severe if you're losing your voice. With both that and the bleeding, it sounds to me like you need a 2nd opinion. My GI always takes bleeding seriously - even though my recent bleeding episodes were caused by hemorrhoids, he still did a flexi-sig to make sure that nothing else was going on and he's also been doing regular bloodwork on me to check on how anemic I am. Can you get a 2nd opinion from a new (better) doctor? Is this your GP or your GI who is blaming everything on supposed IBS?

Good luck with lifting weights! If you're feeling this awful, definitely start out really slowly. For me, I wasn't really able to get into exercise until I got into remission, so don't get frustrated if you find you're just not able to exercise properly right now. Take care of yourself, whether that means exercise or rest!

It's because of my mental health history. Many doctors who see it assume that anything I have is psychosomatic. I can't say they're all bad doctors, they're likely not, but it seems common in the medical profession to write people off if they've had anxiety/depression issues in the past. Which in a way I can understand, psychosomatic issues are probably common.

I've had semi-regular bloodwork when I've felt bad, and I do get increasingly anemic when I have a few days of bad symptoms. This, my doctor tries to blame on me being female and having periods. Even when on those days I have not been on my period. And even when I physically see signs of upper GI bleeding. Logic! It's not super bad anemia, so I'm probably not experiencing any massive bleeding or anything, but still. One should not bleed internally on a regular basis.

But yeah, calling tomorrow. Again. :ybatty:

I think in part this issue is due to my horrible communication skills. I have raging ADHD and I'm prone to rambling. Which is fine in writing when a person can go back and check what I've said but IRL doctor's appointments tend to make me agitated and then I just talk too fast and say too much at once and probably come off a lot crazier than I really am

That and I've had clear upper scopes. Except for the hernia and possible bile reflux. I didn't have any inflammation. Though I was on PPIs at the time so who knows. Might've masked something.

 

[kellehbeans]

Definitely empathise with you girls on the acid reflux etc. Mine has been horrific, and since the weekend it has just got worse and now all my mouth is ulcerated and now I have a sore throat. That, combined with a bad stomach from eating a chocolate sundae (for some reason, I get triggered back into a rough patch when I eat stuff with glucose syrup in!), so I am now having to have Complan for my lunch. <sarcasm>Yay</sarcasm>

 

[Izzie]

Definitely empathise with you girls on the acid reflux etc. Mine has been horrific, and since the weekend it has just got worse and now all my mouth is ulcerated and now I have a sore throat. That, combined with a bad stomach from eating a chocolate sundae (for some reason, I get triggered back into a rough patch when I eat stuff with glucose syrup in!), so I am now having to have Complan for my lunch. <sarcasm>Yay</sarcasm>

That sounds awful kellehbeans, are you on any medication for it?

Chocolate is a huge trigger food for me. Absolute no go. Not sure why, but it is. Probably up there with coffee and wine as the absolute worst trigger foods.

 

[kellehbeans]

That sounds awful kellehbeans, are you on any medication for it?

Chocolate is a huge trigger food for me. Absolute no go. Not sure why, but it is. Probably up there with coffee and wine as the absolute worst trigger foods.

Nope. Was put on omezaparole and domperidone by an out of hours doctor, but never got any more. The omezaparole didn't seem to do much for pain so they were like 'you don't have stomach ulcers, you can come off of this' but the domperidone was a saviour for nausea and acid reflux after eating! I'm just not going to take anything until my GI appointment as I really don't want it to cover up any issues I may have so I can finally find some way of dealing with this all. I think I'm just getting a cold, so I think that's why I have a sore throat, that and ulcers in my mouth are probably also due to the fact I threw up simply stomach acid on Sunday morning. I feel dreadful. I need to ban myself from chocolate and anything containing glucose syrup (unfortunately, most ice cream, so chocolate sundae was the worst possible thing I could have!)

I have bought 2 packs of 48 rennie's and also 2 packs of strawberry complan. That's my next few days sorted... *sigh*

 

[Izzie]

Nope. Was put on omezaparole and domperidone by an out of hours doctor, but never got any more. The omezaparole didn't seem to do much for pain so they were like 'you don't have stomach ulcers, you can come off of this' but the domperidone was a saviour for nausea and acid reflux after eating! I'm just not going to take anything until my GI appointment as I really don't want it to cover up any issues I may have so I can finally find some way of dealing with this all. I think I'm just getting a cold, so I think that's why I have a sore throat, that and ulcers in my mouth are probably also due to the fact I threw up simply stomach acid on Sunday morning. I feel dreadful. I need to ban myself from chocolate and anything containing glucose syrup (unfortunately, most ice cream, so chocolate sundae was the worst possible thing I could have!)

I have bought 2 packs of 48 rennie's and also 2 packs of strawberry complan. That's my next few days sorted... *sigh*

I feel for you. Probably a good idea to not mask symptoms with anything more heavy-duty though, if you have an appointment soon. I think that's what's happened in my case.

I'm in the middle of moving currently too which is just a delight *sarcasm*. Lifting heavy things and bending over a lot is just... mmhm. Lovely.

 

[kellehbeans]

I feel for you. Probably a good idea to not mask symptoms with anything more heavy-duty though, if you have an appointment soon. I think that's what's happened in my case.

I'm in the middle of moving currently too which is just a delight *sarcasm*. Lifting heavy things and bending over a lot is just... mmhm. Lovely.

Nope, unless it starts getting really bad and I do keep throwing up. The throwing up on Sunday is probably pretty explainable, I don't think it was anything to do with the problems I am facing. My appointment is not until September, which is an awfully long time, but I am just finding my own trigger foods etc. for the time being and finally learning to listen to my own body. I really need to stop 'rewarding' my body with 'punishing' foods, such as chocolate because I end up going like this. Ugh, I wanted to go gym tonight, but not sure I have the energy.

Ouch, that must be horrible! Bet it is not helping your back as well as the other things!

 

[Izzie]

Nope, unless it starts getting really bad and I do keep throwing up. The throwing up on Sunday is probably pretty explainable, I don't think it was anything to do with the problems I am facing. My appointment is not until September, which is an awfully long time, but I am just finding my own trigger foods etc. for the time being and finally learning to listen to my own body. I really need to stop 'rewarding' my body with 'punishing' foods, such as chocolate because I end up going like this. Ugh, I wanted to go gym tonight, but not sure I have the energy.

Ouch, that must be horrible! Bet it is not helping your back as well as the other things!

I recognize the whole food as reward/celebration thing. It's a difficult habit to get out of but even moreso difficult for other people to understand, I've found. Like no, I'm sorry I know it's your birthday but I can't drink half a bottle of wine and eat Mexican, I just can't

 

[kellehbeans]

I recognize the whole food as reward/celebration thing. It's a difficult habit to get out of but even moreso difficult for other people to understand, I've found. Like no, I'm sorry I know it's your birthday but I can't drink half a bottle of wine and eat Mexican, I just can't

I'm a recovering bulimic, so I definitely find that exceptionally difficult. I'm not sure whether it's my stomach mimicking a hunger pain, but it definitely sends a signal up to my brain telling me to eat more and more, even if I've eaten 48 bars of the stuff! It's ridiculous. I think I am having to go chocolate tee-total! It's worse than alcohol on my body - I swear! A lot of people DEFINITELY don't understand - even my UC boyfriend doesn't - but does to an extent because he misses things now and again, but he just tells me to resist!

 

[Cat-a-Tonic]

Chocolate is a reflux trigger food for me, too. And oddly enough certain chocolates are worse than others - M&Ms are particularly bad, even just a few of them can cause all sorts of nausea, reflux, stomach pain (it feels like the hard candy shells are scraping my insides), etc. The caffeine in chocolate doesn't do me any favors either as caffeine turns out to be a migraine trigger for me. I've found though that it works for me to purchase a small amount of really expensive chocolates (which don't seem to be such a huge trigger as other, cheaper chocolates) - since it's so expensive, I can only afford to eat one small piece every so often. That's been working for me. I can satisfy my chocolate cravings and sweet tooth without triggering an episode as I'm never eating very much chocolate at one time, and the little chocolate I'm having is high-quality.

 

[kellehbeans]

Chocolate is a reflux trigger food for me, too. And oddly enough certain chocolates are worse than others - M&Ms are particularly bad, even just a few of them can cause all sorts of nausea, reflux, stomach pain (it feels like the hard candy shells are scraping my insides), etc. The caffeine in chocolate doesn't do me any favors either as caffeine turns out to be a migraine trigger for me. I've found though that it works for me to purchase a small amount of really expensive chocolates (which don't seem to be such a huge trigger as other, cheaper chocolates) - since it's so expensive, I can only afford to eat one small piece every so often. That's been working for me. I can satisfy my chocolate cravings and sweet tooth without triggering an episode as I'm never eating very much chocolate at one time, and the little chocolate I'm having is high-quality.

I like this idea! I actually had this suggested to me at a therapy session, and I'm not entirely sure it'd work for me, but I certainly would love to try it - there's one place I'd absolutely love to buy chocolates from - and they look so pretty, so they may actually last me a while, because I'd like to just look at them! (I'm not a freak, I swear!)

Ugh, BM changes in colours, again. This is getting annoying!

 

[UnXmas]

I have horrible reflux, but chocolate is not something that's a problem for me. Nor are fizzy drinks - I don't seem to have the usual trigger foods. I also find that no reflux meds seem to touch my symptoms so who knows? I do find my symptoms get worse later in the day, but sitting upright rather than lying down doesn't help much. Some of the usual reflux/heartburn triggers I never eat anyway. (Alcohol, fried food, coffee.)

Of the things I do eat and drink, my biggest trigger is potatoes, especially mashed.

 

[kellehbeans]

I have horrible reflux, but chocolate is not something that's a problem for me. Nor are fizzy drinks - I don't seem to have the usual trigger foods. I also find that no reflux meds seem to touch my symptoms so who knows? I do find my symptoms get worse later in the day, but sitting upright rather than lying down doesn't help much. Some of the usual reflux/heartburn triggers I never eat anyway.

Of the things I do eat and drink, my biggest trigger is potatoes, especially mashed.

Antacids work for me... but only about 33% of the time. I am starting to learn my triggers a little better. Potatoes is quite an odd trigger though! I'm not potatoes biggest fan, but I feel for you on that one!

 

[Cat-a-Tonic]

Kelleh, it's not odd to just want to stare at pretty chocolates! There's another expensive chocolate place in my city where my brother often goes to buy birthday and xmas gifts, so I get these chocolates as a gift from him a couple times a year. Some of them look like little galaxies and planets to me, they're just amazing to look at! Here's the website of this chocolate place so you can see what I mean:
https://www.infusionchocolates.com/chocolats.php

I love to stare at those and put off eating them as well, so I totally get it! Sometimes I just open the box, stare at them, then carefully put the box away.

UnX, I think I mentioned above somewhere - for some reason, cucumbers are a huge reflux trigger for me. I can juice cucumber and it's fine, no issues whatsoever. But I had a sandwich and they put cucumber slices on it, like just 4 little cucumber slices, but holy cow it gave me heartburn like I'd never had before! So yeah, you're definitely not alone in having a super weird reflux trigger.

 

[Izzie]

Kelleh, it's not odd to just want to stare at pretty chocolates! There's another expensive chocolate place in my city where my brother often goes to buy birthday and xmas gifts, so I get these chocolates as a gift from him a couple times a year. Some of them look like little galaxies and planets to me, they're just amazing to look at! Here's the website of this chocolate place so you can see what I mean:
https://www.infusionchocolates.com/chocolats.php

I love to stare at those and put off eating them as well, so I totally get it! Sometimes I just open the box, stare at them, then carefully put the box away.

UnX, I think I mentioned above somewhere - for some reason, cucumbers are a huge reflux trigger for me. I can juice cucumber and it's fine, no issues whatsoever. But I had a sandwich and they put cucumber slices on it, like just 4 little cucumber slices, but holy cow it gave me heartburn like I'd never had before! So yeah, you're definitely not alone in having a super weird reflux trigger.

It's fascinating what can trigger reflux. I can't have toast. Which is like an old reflux remedy around here

 

[kellehbeans]

Cat - I'm in absolute love. I can't stop staring! Maybe even looking through the Internet will make me not want? [emoji23]

Izzie - that's odd, not heard that one, only really heard it helping nausea, but I think if I was triggered by bread of any kind, I'd probably cry....

 

[UnXmas]

I get the visual appeal of chocolates too. Isn't that why they wrap them in shiny wrappers? Some of the ingredients of the chocolate on that site sound a bit too exotic for me though. Mango and fennel mixed with chocolate?

 

[kellehbeans]

I think humans are secretly magpies with the shiny wrappers! Looking at some of those flavours though, I'd love to get my mits on some of them!

 

[Izzie]

Figuring out food since getting sick is hard! I'm a terrible cook. I both hate it and am bad at it. I've realized I should try and cook more since I'll have more control over what goes in stuff.

 

[kellehbeans]

Ow. Ow. Ow. Anusol hurts internally. Think I have a fissure. Have a hemmy externally, and I think I may have the start of a prolapse that is starting to protrude. Argh. Stomach is awful. I'm so hungry but I feel sick. When does this end?! My mouth is so ulcered right now, and my throat kills! All I want is chocolate!!

 

[Cat-a-Tonic]

UnX, yeah, some of the ingredients at that place are weird and frankly not all the chocolates there are great - the vanilla ones are my favorites (the vanilla crème brulee one is so yummy) but some of the others are just weird and unpleasant. I definitely made an "ick" face when I tried the honey lavender one - chocolate just should not taste like a flower. That's part of the reason why my favorite go-to expensive chocolate place is not this place (I go to a little hole in the wall authentic Swiss chocolatier) - it's fun receiving such pretty chocolates as a gift from time to time, but when I'm buying for myself, I just want good quality chocolate with nothing added or maybe with more normal things added like almond butter, but nothing super outlandish (my go-to place is more affordable too, the outlandish place is crazy expensive!). So yeah, in a some cases those crazy chocolates are much more fun to look at than they are to eat.

Izzie, toast! I haven't heard of that as being a trigger, that stinks. I don't know what I'd do without toast. Life would be more difficult without mashed potatoes, too. I can definitely live without cucumbers, though, ha ha. And yeah, I'm a terrible cook too. If it doesn't come in a box with instructions then I'm pretty much clueless. My husband is the cook in our household and fortunately he's gotten pretty good at working around my tummy issues (using ground turkey instead of beef, and goat cheese in place of anything that came from a cow, etc). I think he honestly likes the challenge of making something that's both delicious and appealing to him (he has zero health issues and can eat anything) and also works for me and my iffy tummy. So I let him do most of the cooking. I end up apologizing a lot when it's my turn to make dinner, ha!

Kelleh, aw, hun, it sounds like you're really not doing well. Hungry plus nauseous plus wanting chocolate but maybe that's not such a good idea right now... maybe a chocolate shake or smoothie, or chocolate milk/soymilk/almond milk/ milk of your choice? That should be easier on you than solid food and will hopefully soothe things a bit plus calm your chocolate craving. Hang in there!

 

[kellehbeans]

I ended up with cereal which irritated my mouth. Ugh. Throat is getting worse. Time to chuck myself into bed and see if a cold comes out tomorrow morning! I have strawberry complan and also vanilla soya protein shakes... Think the complan is liked more by my body than protein shakes though... Maybe I'm just tired and this is another lesson from my body to tell me not to eat any more chocolate sundaes!

 

[Cat-a-Tonic]

Certain vanilla shakes (vanilla Ensure in particular) are highly disliked by my body too so I can understand that - not sure why my body hates the vanilla, as I can do chocolate Ensure with no problem. The vanilla ones send me running to the bathroom right away, though. But yeah, chocolate sundaes may not be the best idea either! I had ice cream for dinner the other night and I paid for it too with tons of gut gurgles and some diarrhea.

 

[kellehbeans]

Vanilla is my favourite flavour, ever! In my soya protein shake, it actually tastes like cake mixture - and probably why I like it so much! I do like a strawberry complan though, and I am planning to have one for breakfast - shall see how I get on, and may get a salad for lunch. I am actually really rather hungry this morning!

 

[Izzie]

So today I've realized that the hospital I go to is a joke. I cannot wait to move.

Short version of my conversation with a nurse today:

"I'd like to speak to my doctor since I'm bleeding again."
"Oh. Ehhhhhmmm. Well he's like on vacation, so."
"Alright, can I speak to someone else then?"
"Ehmmmm, we kinda only have one doctor around right now and he's super busy."
"...Okay so what do you suggest I do then, go to the ER?"
"No don't do that! It's summer they're so busy."
"Okay, but I'm feeling pretty awful and I was told to come in if I had more bleeding so I don't really know what else I can do here."
"Yeah I have no idea. I'll ask someone, I'll call you back in 15 minutes."

It has been 6 hours. She has not called back

This hospital is known for being understaffed and underfunded so it's really no surprise, but jeeez.

 

[kellehbeans]

So today I've realized that the hospital I go to is a joke. I cannot wait to move.

Short version of my conversation with a nurse today:

"I'd like to speak to my doctor since I'm bleeding again."
"Oh. Ehhhhhmmm. Well he's like on vacation, so."
"Alright, can I speak to someone else then?"
"Ehmmmm, we kinda only have one doctor around right now and he's super busy."
"...Okay so what do you suggest I do then, go to the ER?"
"No don't do that! It's summer they're so busy."
"Okay, but I'm feeling pretty awful and I was told to come in if I had more bleeding so I don't really know what else I can do here."
"Yeah I have no idea. I'll ask someone, I'll call you back in 15 minutes."

It has been 6 hours. She has not called back

This hospital is known for being understaffed and underfunded so it's really no surprise, but jeeez.

That is AWFUL! Where are you from Izzie? That sounds absolutely dreadful. Go to ER. They'll listen to you. She had no intention on calling you back. Bleeding is nothing to be sniffed at.

 

[Izzie]

That is AWFUL! Where are you from Izzie? That sounds absolutely dreadful. Go to ER. They'll listen to you. She had no intention on calling you back. Bleeding is nothing to be sniffed at.

Good ol' Scandinavia. There's generally nothing wrong with health care here but you have to go to the hospital in your region and depending on where you live it can be better or worse...

I'm not really sick enough to go to the ER, so I'm just going to call again tomorrow and hope I get a hold of a more helpful human haha.

Grateful I'm moving to a city with a proper university hospital rather than this second-rate place haha :biggrin:

 

[kellehbeans]

Good ol' Scandinavia. There's generally nothing wrong with health care here but you have to go to the hospital in your region and depending on where you live it can be better or worse...

I'm not really sick enough to go to the ER, so I'm just going to call again tomorrow and hope I get a hold of a more helpful human haha.

Grateful I'm moving to a city with a proper university hospital rather than this second-rate place haha :biggrin:

I thought Scandinavia had OK healthcare? They seemed to be OK when I went with my best friend for something completely different when I was in Sweden last year. That sounds really awful, but if you think you can hold on, I'll believe in you!

 

[Izzie]

I thought Scandinavia had OK healthcare? They seemed to be OK when I went with my best friend for something completely different when I was in Sweden last year. That sounds really awful, but if you think you can hold on, I'll believe in you!

Generally, it's perfectly fine. Especially in larger cities I've never had a problem. But I live practically in the middle of nowhere right now and the hospital I go to is responsible for a huuuuuge region of other middle of nowhere-type places as well. And I doubt that the quality docs want to work in such a boring place

 

[kellehbeans]

Generally, it's perfectly fine. Especially in larger cities I've never had a problem. But I live practically in the middle of nowhere right now and the hospital I go to is responsible for a huuuuuge region of other middle of nowhere-type places as well. And I doubt that the quality docs want to work in such a boring place

I doubt any of Scandinavia is boring! I had been promising my best friend to go visit her (she moved away when she was 14, we're both now 21/22), and I only managed to visit her last December. It was absolutely beautiful. I will have to admit, the 3 hour train journey to mid-Sweden was kind of boring because the weather was pretty poor, but I absolutely love Scandinavia. I want to visit the other countries, but hoping to go back. I love the culture, but probably can blame their amazing food for stomach problems when I got back - I think I drank so much chocolate milk, coffee and hot chocolate that it would internally mess me up! Coffee is completely different to here, you don't even buy by size, which shocked me - just by amount of shots! Typical me bought the highest amount - I was totally buzzing!

 

[Izzie]

I doubt any of Scandinavia is boring! I had been promising my best friend to go visit her (she moved away when she was 14, we're both now 21/22), and I only managed to visit her last December. It was absolutely beautiful. I will have to admit, the 3 hour train journey to mid-Sweden was kind of boring because the weather was pretty poor, but I absolutely love Scandinavia. I want to visit the other countries, but hoping to go back. I love the culture, but probably can blame their amazing food for stomach problems when I got back - I think I drank so much chocolate milk, coffee and hot chocolate that it would internally mess me up! Coffee is completely different to here, you don't even buy by size, which shocked me - just by amount of shots! Typical me bought the highest amount - I was totally buzzing!

Yeah I find coffee in other countries quite odd actually I actually think my overconsumption of coffee had a hand in causing my digestive problems. Had to quit cold turkey this year after a 5 cup a day habit for years :biggrin:

 

[kellehbeans]

Yeah I find coffee in other countries quite odd actually I actually think my overconsumption of coffee had a hand in causing my digestive problems. Had to quit cold turkey this year after a 5 cup a day habit for years :biggrin:

It's so much tastier over there too! My friend sent me some things across the border not so long ago - unfortunately, I had to give away to my work colleagues the kokosbollar as it's both coffee and chocolate - so stomach hellfire - albeit, extremely tasty! I also ate 60kr worth of pick and mix sweets on my own.. over a few days though! Although, she hid salt liquorice in there, hoping I'd be eating whilst driving and not notice - luckily, I did! 1) I dislike it and 2) that would have definitely ruined my stomach!

 

[Izzie]

It's so much tastier over there too! My friend sent me some things across the border not so long ago - unfortunately, I had to give away to my work colleagues the kokosbollar as it's both coffee and chocolate - so stomach hellfire - albeit, extremely tasty! I also ate 60kr worth of pick and mix sweets on my own.. over a few days though! Although, she hid salt liquorice in there, hoping I'd be eating whilst driving and not notice - luckily, I did! 1) I dislike it and 2) that would have definitely ruined my stomach!

I'm an odd Swede because I HATE pick and mix. Ugh I just hate it. Mostly because I witness little kids sneezing into the containers every time I shop :ylol:

Called the hospital again. And I get so annoyed every time that I can't even talk about it haha.

 

[kellehbeans]

I'm an odd Swede because I HATE pick and mix. Ugh I just hate it. Mostly because I witness little kids sneezing into the containers every time I shop :ylol:

I find it amusing that they have one that is more sort of healthy, with nuts etc., and I think I see people buy those more often than the sweets. I didn't see any children putting their hands in it, I think that's more an English thing - I didn't see it in Sweden, but the kids were MUCH better behaved - in both Karlstad and Gothenburg!

 

[Izzie]

Anyone have any thoughts on Omeprazole vs. Ranitidine for reflux?

I have both prescribed and I've been told to "experiment" with what works best but I don't know which is the stronger/more effective option generally?

 

[Cat-a-Tonic]

Izzie, Omeprazole is far better in my experience at least. It's also got higher risks though (if you're on it long-term, it can start to rob you of bone mass, so take calcium & vitamin d if you're on Omeprazole). Ranitidine is relatively low-risk but also doesn't work super well. When I first developed GERD, I was put on Omeprazole and it worked pretty well. My GP didn't like the potential risks though so he took me off of it and put me on Ranitidine. Within a couple weeks of that, I had probably my worst reflux episode ever! I literally had a dream one night that my reflux was out of control and I felt so awful and nauseous in this dream... then I woke up and realized, it was not a dream! I had to run for a bucket and my heating pad and whatever meds I could find. It was a seriously unpleasant time. I went right back on Omeprazole after that.

20 mg Omeprazole did eventually fail me as my body got used to it and it stopped working as well (even a double dose, 40 mg, eventually failed me) so now I'm on 40 mg Nexium (also known as esomeprazole, a very similar med). I do currently take Ranitidine as essentially a supplemental reflux med. I take 300 mg of Ranitidine just prior to a workout, and also just before bedtime as I tend to reflux even more when I'm lying down. So Ranitidine does have its merits, but I personally can't use it as my main/only reflux med.

So, long story short, for me the stronger and more effective med is definitely Omeprazole! If your reflux is really bad, you could probably even take both. There are some risks, yes, but for me the risks and miserableness of uncontrolled GERD is far worse. And I don't want to end up with Barrett's esophagus or anything like that, so I'd rather control the GERD. I do take calcium & vit d, and I also do weight-bearing exercise to combat any bone loss from my meds.

 

[UnXmas]

Anyone have any thoughts on Omeprazole vs. Ranitidine for reflux?

I have both prescribed and I've been told to "experiment" with what works best but I don't know which is the stronger/more effective option generally?

Neither helped me at all. Or at least not that I've noticed. Anaesthetists give me Ranitidine prior to surgeries to stop me refluxing into my lungs when I'm under anaesthetic, and they claim it works, though I had emergency surgery without it and still managed not to choke while unconscious so who knows if it actually works or not.

(That was a very unhelpful answer wasn't it - sorry!)

 

[Izzie]

Izzie, Omeprazole is far better in my experience at least. It's also got higher risks though (if you're on it long-term, it can start to rob you of bone mass, so take calcium & vitamin d if you're on Omeprazole). Ranitidine is relatively low-risk but also doesn't work super well. When I first developed GERD, I was put on Omeprazole and it worked pretty well. My GP didn't like the potential risks though so he took me off of it and put me on Ranitidine. Within a couple weeks of that, I had probably my worst reflux episode ever! I literally had a dream one night that my reflux was out of control and I felt so awful and nauseous in this dream... then I woke up and realized, it was not a dream! I had to run for a bucket and my heating pad and whatever meds I could find. It was a seriously unpleasant time. I went right back on Omeprazole after that.

20 mg Omeprazole did eventually fail me as my body got used to it and it stopped working as well (even a double dose, 40 mg, eventually failed me) so now I'm on 40 mg Nexium (also known as esomeprazole, a very similar med). I do currently take Ranitidine as essentially a supplemental reflux med. I take 300 mg of Ranitidine just prior to a workout, and also just before bedtime as I tend to reflux even more when I'm lying down. So Ranitidine does have its merits, but I personally can't use it as my main/only reflux med.

So, long story short, for me the stronger and more effective med is definitely Omeprazole! If your reflux is really bad, you could probably even take both. There are some risks, yes, but for me the risks and miserableness of uncontrolled GERD is far worse. And I don't want to end up with Barrett's esophagus or anything like that, so I'd rather control the GERD. I do take calcium & vit d, and I also do weight-bearing exercise to combat any bone loss from my meds.

My thoughts have been similar re: the Omeprazole. It doesn't seem to be doing enough, I'm on 40 mg a day atm and it's not doing the trick. It helps, but not enough. Going to see if I can try another version of the same, like Nexium or something. Currently I'm taking OTC antacids as well as the Omeprazole to get through the day.

I'm not at all fond of the idea of being on medication constantly but like you said, untreated severe reflux is the worse option IMO, especially considering I've had a family member die of esophageal cancer and it was not a fun time for anyone.

One doctor mentioned carafate as an option but I've not heard anything about it nor do I even know how it works. I think that was on the table when they discussed possible bile reflux. Which I still don't know if I have (one doctor says I do, didn't write it in the chart - I have a paper that was sent home that says I have it but it's nowhere else in my files and other doctors don't take it seriously).

I've resorted to making an appointment with my family doctor instead of my GI guy, because at least she doesn't think I'm crazy :shifty-t:

 

[Cat-a-Tonic]

I haven't been on Carafate myself so I can't comment on that one. I'm not sure if I have bile reflux or not - it's nothing that's been mentioned to me by either my GI nor my GP - but I do take psyllium husks which I've heard can help with bile reflux (can also help in some cases with diarrhea which is why I take psyllium - during my first remission, I was still going to the bathroom 4 to 10+ times a day, and psyllium got me down to 2-4 times per day). So you may want to look into psyllium - it's just basically soluble fiber, I mix one teaspoon into a glass of water every day. It helps my guts a fair bit, and it's not a medication (I tend to think of it as a supplement). Yes, it is fiber, but it's soluble - this is important, because soluble is much easier on most of us than insoluble. Insoluble fiber definitely makes my guts way worse. Small amounts of good soluble fiber, like psyllium, actually does help at least for me.

Good luck with your family doctor! Hopefully they can do something to help. And I'm glad to hear that you have at least one decent doctor who takes you seriously!

 

[gadgetninjette91]

All this talk of reflux has me thinking about my own personal triggers. Chocolate is absolutely terrible. Never liked chocolate very much as a kid or as an adult sans white chocolate which isn't really chocolate. But in general, anything sweet turns my stomach. Has partly to do with fructose malabsorption which I tested positive for, likely has something to do with my small intestine. Anything caffeinated is a big no, I throw it up. Anything greasy or fatty won't sit too well with me either.

Speaking of my small intestine, had my consult with my gastro today and I feel very good about it. I mentioned the masses and lumps I've been feeling and all the odd sensations. He said I could very well have Crohn's activity up top even if the lower part is in remission. Being kept on a 5-ASA (now Apriso thanks to an insurance change which I had to fight for a whole week to get filled) since it's taking care of at least part of the problem. Going in for another CT scan on Friday with every contrast possible. Nervous to see how messed up it is now in comparison to in March. But the fact that my gut feeling (no pun intended) was right all along assures me that I have a very good understanding of what I feel in my own body which works to my advantage. Very very happy with my new doctor, moving back in with my mom was hard but ultimately worth it and in my best interest. I don't think I'll end up back in the undiagnosed club at this point as he's talking biologics if he finds what he's looking for (and I have a strong feeling that he will), but hopefully I can avoid surgical intervention with successful biologic therapy. My scan is Friday and I'm going in to follow up again a week from today.

Sending my support to you all.

 

[kellehbeans]

All this talk of reflux has me thinking about my own personal triggers. Chocolate is absolutely terrible. Never liked chocolate very much as a kid or as an adult sans white chocolate which isn't really chocolate. But in general, anything sweet turns my stomach. Has partly to do with fructose malabsorption which I tested positive for, likely has something to do with my small intestine. Anything caffeinated is a big no, I throw it up. Anything greasy or fatty won't sit too well with me either.

Speaking of my small intestine, had my consult with my gastro today and I feel very good about it. I mentioned the masses and lumps I've been feeling and all the odd sensations. He said I could very well have Crohn's activity up top even if the lower part is in remission. Being kept on a 5-ASA (now Apriso thanks to an insurance change which I had to fight for a whole week to get filled) since it's taking care of at least part of the problem. Going in for another CT scan on Friday with every contrast possible. Nervous to see how messed up it is now in comparison to in March. But the fact that my gut feeling (no pun intended) was right all along assures me that I have a very good understanding of what I feel in my own body which works to my advantage. Very very happy with my new doctor, moving back in with my mom was hard but ultimately worth it and in my best interest. I don't think I'll end up back in the undiagnosed club at this point as he's talking biologics if he finds what he's looking for (and I have a strong feeling that he will), but hopefully I can avoid surgical intervention with successful biologic therapy. My scan is Friday and I'm going in to follow up again a week from today.

Sending my support to you all.

Quick question, I'm not sure how ingredient labelling works in your country, but when does glucose-fructose become just glucose syrup? I know here it is under 50%, and apparently that is not enough to trigger any sort of symptoms off of fructose malabsorption. However, I react to glucose syrup - something terrible. I need to ask about the breath test for this, but I'm not sure if this is going to be from my GP and I actually have no idea how this thing works..

On a side note - prune juice is AWFUL. :eek2:

 

[Izzie]

Prune juice was one of my favorite things as a child. You can imagine the consequences of that favorite food, I'm sure

 

[kellehbeans]

Prune juice was one of my favorite things as a child. You can imagine the consequences of that favorite food, I'm sure

Eek! I tried to like it - couldn't do it. Had to tip it away unfortunately. It's also made me feel quite sick. I've lost my appetite and I think that's something to do with the Venlafaxine and going basically cold turkey. I'm only just coming up to 48 hours without, and if I don't keep deadly still, I feel like I'm going to chuck. This is what my doctor told me to do! On top of my stomach being an absolute pain, this is really not helping! She gave me a prescription for a lower dose, which is the lowest you can get as a just in case measure, but I'm starting to feel if I take it then I'll never get off of the meds.

 

[Izzie]

Eek! I tried to like it - couldn't do it. Had to tip it away unfortunately. It's also made me feel quite sick. I've lost my appetite and I think that's something to do with the Venlafaxine and going basically cold turkey. I'm only just coming up to 48 hours without, and if I don't keep deadly still, I feel like I'm going to chuck. This is what my doctor told me to do! On top of my stomach being an absolute pain, this is really not helping! She gave me a prescription for a lower dose, which is the lowest you can get as a just in case measure, but I'm starting to feel if I take it then I'll never get off of the meds.

I've never been on them myself but I've heard that quitting SNRIs/SSRIs cold turkey can be quite the ordeal. The norm here I believe is to gradually ease off those kinds of medications.

Take care of yourself!

 

[kellehbeans]

SSRI's are generally OK, they just affect you mentally when you reduce, same with most SNRI's. I'm mostly allergic to SSRI's, that's why I'm on the one I am on. However, Venlafaxine is the most addictive - so mental and physical effects would both be present! Have to admit, I don't feel mentally 'bad', just physically. I think I feel too numb and ill to care about anything else around me to be quite honest!

EDIT: When I say OK, I mean, you don't feel as if you're going to chunder - but they definitely make you feel awful! Been there, done that!

 

[Izzie]

Had my family doc appointment this morning and MAN I should've thought to go back there sooner. She's so nice! And had some new perspectives.

Still anemic, but not worse, so that's something. Increased Omeprazole dose to see if that makes me feel better.

She immediately told me that the doctor who claims I have IBS is just plain wrong. Because you don't bleed with IBS. And what I'm noticing is most likely blood.

However, she also had a thought that what I perceive as blood might not be blood. Seeing as my endoscopies and MRIs have been clear, and I've only ever had one positive occult blood test, the rest I've just gone by eye, and the anemia.

She mentioned they take a LOT of blood tests when I come in for bad symptoms, so that in and of itself could be a contributing factor to the anemia, since it's so slight all things considered. I've always had low blood iron even when I'm within normal range.

Basically, she wants to do more food allergy tests to rule out that what I think is blood isn't just my body reacting to an allergen. It could also be a small bowel IBD thing, which is why the pill cam is happening. SOMETHING is triggering these episodes of "bleeding"/pain, and it's just not IBS. So HAH GI guy, suck on that!

I love doctors who don't have a one-track mind and decide from the minute you walk in that they know everything and just need to convince you. When a doctor is humble and is like "it could be this, but it could also be this, these are just some thoughts now lets follow up with tests to see which one is more likely" - that's when you actually get somewhere.

Sorry to hear that kellehbeans, hopefully the "withdrawal" if you can call it that, will be over quickly.

ETA: Was told to be extra diligent about diet. No lactose and no iffy additives. Meaning, I have to start cooking more :eek2:

 

[kellehbeans]

Izzie, that's awesome! Glad to hear you seem to be getting somewhere and actually have somebody that is listening to you! Let me know how you get on with Omeprazole. What dosage are you on now? IBS definitely does not include blood, and would definitely not show anaemia. Let us know how you get on!

I also hope it passes soon. Every time I keep applying AnuSol cream, I have a BM and have to reapply. It's getting annoying. Letting stomach settle before I attempt again.

Question before I pass this one onto my boyfriend (just to see if I can save myself a little bit! Although I know he'll understand!) - fissure and hemmy have not healed on their own after 2 weeks. The hemmy is very dark, and fissure is very painful. AnuSol stings when I put it inside. Does anybody know how long any sort of creams would take to heal and if they don't heal, what do I do??

 

[Cat-a-Tonic]

Kelleh, you might want to see your GP about the hemmie and fissure. Not sure if they do this in the UK, but my GP here is able to prescribe me hydrocortisone suppositories for my recurrent hemmie issues. The ones I took were called Anucort and they worked pretty well. Creams just weren't cutting it for me either and mine weren't healing on their own. I'm betting your GP will be able to prescribe you something to help - probably something along the lines of suppositories or enemas.

Izzie, I'm so glad you had a good appointment and it sounds like you're finally getting somewhere! Good luck with the upcoming tests! Keep us posted on how everything goes.

Gadget, good luck with the scan! I haven't been on biologics myself but I've heard a lot of good things on the forum, many people get a much improved quality of life from biologics so I hope they work well for you too. Let us know what happens!

 

[kellehbeans]

Kelleh, you might want to see your GP about the hemmie and fissure. Not sure if they do this in the UK, but my GP here is able to prescribe me hydrocortisone suppositories for my recurrent hemmie issues. The ones I took were called Anucort and they worked pretty well. Creams just weren't cutting it for me either and mine weren't healing on their own. I'm betting your GP will be able to prescribe you something to help - probably something along the lines of suppositories or enemas.

Izzie, I'm so glad you had a good appointment and it sounds like you're finally getting somewhere! Good luck with the upcoming tests! Keep us posted on how everything goes.

Gadget, good luck with the scan! I haven't been on biologics myself but I've heard a lot of good things on the forum, many people get a much improved quality of life from biologics so I hope they work well for you too. Let us know what happens!

I don't have any blood with the external hemmy, or anything with what I'm guessing is an internal fissure.

Stupidly just ate some wine gums, not thinking and now I have a really sharp stabbing pain in my LLQ... urgh. Silly me. Tablets also taken, I couldn't cope with it.

 

[UnXmas]

Had my family doc appointment this morning and MAN I should've thought to go back there sooner. She's so nice! And had some new perspectives.

Still anemic, but not worse, so that's something. Increased Omeprazole dose to see if that makes me feel better.

She immediately told me that the doctor who claims I have IBS is just plain wrong. Because you don't bleed with IBS. And what I'm noticing is most likely blood.

However, she also had a thought that what I perceive as blood might not be blood. Seeing as my endoscopies and MRIs have been clear, and I've only ever had one positive occult blood test, the rest I've just gone by eye, and the anemia.

She mentioned they take a LOT of blood tests when I come in for bad symptoms, so that in and of itself could be a contributing factor to the anemia, since it's so slight all things considered. I've always had low blood iron even when I'm within normal range.

Basically, she wants to do more food allergy tests to rule out that what I think is blood isn't just my body reacting to an allergen. It could also be a small bowel IBD thing, which is why the pill cam is happening. SOMETHING is triggering these episodes of "bleeding"/pain, and it's just not IBS. So HAH GI guy, suck on that!

I love doctors who don't have a one-track mind and decide from the minute you walk in that they know everything and just need to convince you. When a doctor is humble and is like "it could be this, but it could also be this, these are just some thoughts now lets follow up with tests to see which one is more likely" - that's when you actually get somewhere.

Sorry to hear that kellehbeans, hopefully the "withdrawal" if you can call it that, will be over quickly.

ETA: Was told to be extra diligent about diet. No lactose and no iffy additives. Meaning, I have to start cooking more :eek2:

Congratulations on finding a doctor who listens! They seem to be quite a rare thing to come across.

Sorry for the personal question, and I'm sure you've probably mentioned this before, but what does the blood/thing you perceive as blood look like?

Also, I've not heard of anaemia being caused by blood tests. When I've been in hospital at times they've taken blood from me a few times a day, taking multiple vials each time. I don't think the possibility of it causing anaemia has ever been mentioned.

 

[Izzie]

Congratulations on finding a doctor who listens! They seem to be quite a rare thing to come across.

Sorry for the personal question, and I'm sure you've probably mentioned this before, but what does the blood/thing you perceive as blood look like?

Also, I've not heard of anaemia being caused by blood tests. When I've been in hospital at times they've taken blood from me a few times a day, taking multiple vials each time. I don't think the possibility of it causing anaemia has ever been mentioned.

She agreed that it was probably a stretch, too. But that and my rather severe periods and the fact that I do things like dramatically bleed out of my arm in public bathrooms and barely eat... it's not impossible I guess :lol2:

And as for the blood thing, ehm basically extremely dark/sometimes black with an unusually unpleasant smell? First time I noticed it I did not guess blood, but then they took that occult blood test and I was suddenly anemic so that is now what I associate with it. Not usually diarrhea for me which is I guess unusual? I've gotten the impression that blood = diarrhea for many.

I mean, it's unlikely that it isn't, considering everything, but since they're not finding the source of it she thought it could be worth to check twice, so to speak. If they haven't found anything on 3 gastroscopies, nothing on a colonoscopy, or an MRI - that's unusual. Pill cam still might reveal something, but that remains to be seen.

 

[Cat-a-Tonic]

Izzie, I'm not doubting that it's blood, but just to make sure - have you possibly eaten anything that could have been mistaken for blood? I sometimes get little black blobs in my stool which sure look like blobs of congealed blood - but, they only appear when I've eaten mushrooms. I think my body just can't quite break down mushrooms so they turn into black blobs in my stool. I also recently had some smaller black bits in my stool which turned out to be undigested blueberries. And certain medications or foods high in iron can also turn the stool itself dark - I know that pepto bismol can turn the stool dark/black, and spinach can turn the stool green or black. Since you're anemic, it probably is blood but it's good to be certain - for me it's certainly been a relief that it's just undigested food and not something more sinister!

Pill cam sees a lot of small intestine that the upper and lower scopes aren't able to see. MRI is a good test but can still miss things (of course, pill cam can miss things too, but it's generally getting a better view of things than MRI). It's a very good test to have and I hope it is enlightening for you!

 

[Izzie]

Izzie, I'm not doubting that it's blood, but just to make sure - have you possibly eaten anything that could have been mistaken for blood? I sometimes get little black blobs in my stool which sure look like blobs of congealed blood - but, they only appear when I've eaten mushrooms. I think my body just can't quite break down mushrooms so they turn into black blobs in my stool. I also recently had some smaller black bits in my stool which turned out to be undigested blueberries. And certain medications or foods high in iron can also turn the stool itself dark - I know that pepto bismol can turn the stool dark/black, and spinach can turn the stool green or black. Since you're anemic, it probably is blood but it's good to be certain - for me it's certainly been a relief that it's just undigested food and not something more sinister!

Pill cam sees a lot of small intestine that the upper and lower scopes aren't able to see. MRI is a good test but can still miss things (of course, pill cam can miss things too, but it's generally getting a better view of things than MRI). It's a very good test to have and I hope it is enlightening for you!

Nothing that I've been able to identify, no. I mean it always happens when my symptoms and pain worsen, too, so like you say there's little reason to doubt it. It's always been pretty... uniformly black, so to say, which is why I never even thought it was blood in the first place until I was told :tongue: Still I appreciate doctors not having a one-track mind so if it might be food allergies, then by all means test me for food allergies, you know?

Insted of the stonewall-attitude "It's IBS" that I've been met by a couple times.

I don't know if this is a universal experience that any of you recognize but I find that the more educated a doctor is, the more likely they are to be an ass :ylol: Also have had far worse issues with male doctors being condescending and unpleasant. Don't think I've ever experienced the same with a female doctor, though honestly I've been passed around to so many that I may just be unable to recall.

 

[UnXmas]

I've had extremely arrorgant female doctors, and some very wonderful experienced/senior doctors, surgeons in particular, so who knows?

 

[gadgetninjette91]

Quick question, I'm not sure how ingredient labelling works in your country, but when does glucose-fructose become just glucose syrup? I know here it is under 50%, and apparently that is not enough to trigger any sort of symptoms off of fructose malabsorption. However, I react to glucose syrup - something terrible. I need to ask about the breath test for this, but I'm not sure if this is going to be from my GP and I actually have no idea how this thing works..

On a side note - prune juice is AWFUL. :eek2:

I'm not entirely sure. But I know I have to avoid that stuff like the plague or I'm in for some trouble. Pretty much anything with corn syrup or lots of sugar (the body breaks it down into at least part fructose) I have to avoid so I can't do most candy. I would imagine glucose syrup breaks down similarly to regular sugar which is always converted to at least part fructose. Maple syrup and dextrose-based sweeteners are generally the safest, also haven't had a problem with stevia but sweet things make me too sick as of late for me to even give them a try. Best way to know is through a breath test which was performed by my first gastro. I didn't even know fructose intolerance was a thing until they told me I had it (of course I was telling myself that that can't possibly be the only problem, turns out I was right). But don't be surprised if you test positive. I believe it's a fairly common problem in IBD patients and I think in IBS as well, but I know mine is due to a small intestinal problem.

Started flaring again today, my upper abdomen is very swollen. Exhausted, a lot of pain in my knees and ankles, folding my laundry sitting down for once. Staying hydrated is only that much harder before my test. But will keep everyone posted on what happens. I'm off to get myself some electrolyte water. Liquids are one thing but losing electrolytes is a whole different story. I get dizzy and lots of leg cramps. Anyone experience this? The leg cramps are particularly problematic and don't help the joint pains at all.

 

[gadgetninjette91]

Eek! I tried to like it - couldn't do it. Had to tip it away unfortunately. It's also made me feel quite sick. I've lost my appetite and I think that's something to do with the Venlafaxine and going basically cold turkey. I'm only just coming up to 48 hours without, and if I don't keep deadly still, I feel like I'm going to chuck. This is what my doctor told me to do! On top of my stomach being an absolute pain, this is really not helping! She gave me a prescription for a lower dose, which is the lowest you can get as a just in case measure, but I'm starting to feel if I take it then I'll never get off of the meds.

No, no, no, no, do NOT take an SSRI or anything like it. Just my experience, I took Luvox (fluvoxamine) for three years and it was horrendous to come off of. Not only made my mental state worse but when coming off of it for good, I felt like I was getting electric shocks all throughout my body, particularly in my head. Very nauseous, dizzy, had to lie down, all the while coming down with a bad case of mono but I experienced withdrawals every time I'd run out of my prescription and they'd have to order it special because Luvox is not prescribed very much anymore. I have never taken an SSRI since and I actively refuse to be put on one again. I honestly don't even know why those drugs are legal. Anyway, that being said, you should make your own decision, but I highly advise against taking anything like that. Once you get off, it's best to stay off and never have to deal with that monster again.

 

[kellehbeans]

No, no, no, no, do NOT take an SSRI or anything like it. Just my experience, I took Luvox (fluvoxamine) for three years and it was horrendous to come off of. Not only made my mental state worse but when coming off of it for good, I felt like I was getting electric shocks all throughout my body, particularly in my head. Very nauseous, dizzy, had to lie down, all the while coming down with a bad case of mono but I experienced withdrawals every time I'd run out of my prescription and they'd have to order it special because Luvox is not prescribed very much anymore. I have never taken an SSRI since and I actively refuse to be put on one again. I honestly don't even know why those drugs are legal. Anyway, that being said, you should make your own decision, but I highly advise against taking anything like that. Once you get off, it's best to stay off and never have to deal with that monster again.

I have made the decision to take one a day, until they run out, which should be ample rather than taking a massive drop. I have to admit, I actually feel like myself now, not like earlier!

 

[gadgetninjette91]

I have made the decision to take one a day, until they run out, which should be ample rather than taking a massive drop. I have to admit, I actually feel like myself now, not like earlier!

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