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Wow this moves fast! I'll have to go back and read and see how you are all doing!
I've started the predsol suppositories and first 2 went ok but tonight's really stung [emoji15] not sure what that's about. I'll persist for now I guess.
 
Welcome to all the new members! Glad to have you, but so sorry for the circumstances that lead you here.

Wishing everyone that is struggling health, and for all the upcoming tests that they reveal treatable causes.

I am wallowing in self-pity this morning. Been on 125mg of Vanco 4x a day with saccharomyces boulardii 500mg 2x a day (my GI wanted me on both this time around, last time he just had me on the probiotics AFTER the Vanco, this time he's trying to hit the C Diff from all angles at once) since Sunday, and still having watery D at least 5-7+ times a day. I'm trying to give it more time before I call GI and say it isn't working. I keep thinking that so long as I'm not running a fever, I can hold out until next Monday, giving the meds a full week to "kick in".

But my belly is so LOUD. It gurgles and churns with anything I eat or drink. I was feeling dehydrated a bit yesterday, and I was drinking water, and you could hear it hitting my stomach, then it was as if you could hear it splooshing through the rest of my guts for the next half hour until finally I was running to the toilet. My daughter was hanging out with me and even she was impressed by the sounds!
 
Wildmtn, that sounds awful. :( How long does the Vanco usually take to kick in? If it were me, I think I'd be calling the doctor before Monday, because it sounds like things are still quite bad. I hope things improve soon!

Shell, I'm not sure why the suppositories would sting - I've been off and on them for awhile myself, because of internal bleeding hemorrhoids (so fun). At worst, I've had hemorrhoids that were right inside the anal sphincter, so inserting a steroid suppository and having it push past the hemmie as it went in, that was a fairly painful time, but I don't think I've ever noticed any stinging sensation. If it persists, definitely let your doctor know. Hopefully it's just a bit of irritation from the steroid going in or something like that.

Izzie, that's great that you're able to take some time off and take care of yourself! :) As for the upcoming tests - I think I've mentioned in the past about how getting the NG tube in was the worst part of the pH impedance test for me, but that's only because I have a screwed up nose and the tube just wouldn't go in. Other than that, it was irritating to my nose and sinuses to have an NG tube in for 24 hours, but honestly that was the worst of it. As long as you can get the okay to stay on your meds during the test, I think you'll be fine and it won't be bad. I only had discomfort because of the nurse trying and failing to jam the NG tube in, but you shouldn't have that issue.

How's everybody doing today? I'm improving and feeling okay. :) I went to the gym on Monday and that went really badly, but I was super exhausted on that day because we just had Daylight savings time kick in so that threw off my sleep schedule and I was really tired, and anytime I am overtired then my guts get upset. So I had gone to the gym while dealing with that and obviously my body wasn't happy with it. But I went to the gym again yesterday and that went much better, I've adjusted to DST so I'm not overtired anymore and my guts are doing much better. Being able to work out again is great too! I guess I must be healed from the hemmie banding at this point, it's been 3 weeks as of today since the procedure and I haven't bled at all for awhile now (and when I did have bleeding, it was just the tiniest bit). So I am hopefully healed, I'm recovered from DST, I am working out again - all good stuff! :D I know the jet lag from going to Japan is going to wreck my guts all over again, though, so I'm already anticipating that my first few days in Japan are going to consist of me being exhausted and my guts being really unhappy. Oh well, at least I'll have the cherry blossoms to distract me! And a zillion other interesting things to see and do as well.
 
Was thinking.. if all I have is gastritis, and Barrett's Esophagus, why are all my vitamin levels dropping? like B12 which lowers every time I get it taken? What else could cause these issues if I seemingly have no issue with my bowels?

I'm still waiting to hear back about H. Pylori, and the pathology on the biopsies, but I'm not expecting much to come back. Just curious what is causing this!
 
Elephant, I know that B12 is mainly absorbed in the terminal ileum, so I would imagine that you have to have something going on there. For what it's worth, they've never found anything in my TI either, but that's where my main "pain spot" is, and I have to supplement B12 or it drops too low. So I have to presume that I've got some TI involvement, but it's never shown itself visually nor on biopsy. Sometimes this stuff just likes to hide REALLY well.
 
Cat thank you for all the advice and support so far, I really do appreciate it!
I don't have much fat in my diet really and the floating is only maybe a couple times per week but I will see if I can work it out from my food diary. I wouldn't be surprised if I have absorption problems some (if not all) of the time to be honest. I know it might sound odd but I can tell from how I feel, I definitely don't feel like I'm getting all the good from my food, even when I have a good few days food wise I still feel weak and shakey most of the time.

I'm so over all this wondering and waiting now, I really just want to know what is going on and I can't shake the feeling that I'm going to be fobbed off again especially if they do the gastroscopy and the biopsies show nothing. I don't feel like it's coeliac in a lot of ways but I know I could be wrong, I don't eat huge amounts of gluten containing foods but I have at least two things per day (cereal bars, biscuits, toast etc) so I'm sure that would be enough for me to notice a difference? I will be eating LOTS of bread and pasta in the run up to the gastroscopy just in case!

Being undiagnosed is mentally taking its toll on me this week if I'm honest. I've been feeling so crappy and weak and exhausted, the nausea is constant so eating is a real battle, there's not been a night this week I haven't woken at roughly 3.30am boiling hot, sweating and feeling so sick I've had the household puke jug by my bed in case. The buscopan hasn't helped the pain and this new area of pain (under bottom ribs on left hand side) is getting to me, it's so sharp and gripping, I really struggle to describe it properly. I just want to feel better, to feel like myself again and to enjoy life. I really am just existing at the moment.

I feel like I'm getting obsessed with trying to work out what is wrong with me, like I'm googling randomly trying to find something that might help point me in the right direction based off all my results so far and all that. I think it's because I feel so let down by the doctors so far. The gastro leaves me with the feeling that I'm making a big deal out of nothing and being a wuss or lying to her or something. I hate it!

We haven't had DST yet here in the UK but I'm very glad it happens while I'm off work, my sleep routine needs some work as it is!

Izzie I hope taking the time off helps you feel a bit better, sometimes it's better to take the time off before you reach the point where you have to because you can't get out of bed if that makes sense. I totally understand the nerves about tests, I'm feeling the same, it's so frustrating isn't it! I really hope the pH test gives you some more answers and isn't too painful.
 
Having an unknown type of auto-immune disease of unknown cause every thing I do is like opening Pandoras box. Where I live we have had the past two months of very high temperatures of 30c and over combined with humidity that rarely gets below 60%.I have found it stressful conditions just to survive and go about my daily life ,work and rest. I take my blood pressure and blood sugars every morning when I get up (at the request of my nephrologist). My b/p over the last two months has averaged 130/75 and my bs between 6.9 and 7.9. In the last fortnight I have suffered at least three acute asthma attacks. I always carry ventolin as an emergency reliever and it works tho the last time it was touch and go. I am supposed to use a symbicort turbohaler every morning as a preventative. I usually don't as it causes me a lot of throat problems , you are not allowed to swallow it and need to wash my mouth out and gargle after each use. I do. The trouble is that steroids are my kryptonite. I was treated for nephrotic syndrome of the kidneys for 18 months with 75 mg daily of prednisone . My protein loss actually rose whilst I was on it . It was only after a heated argument with my then neph that he admitted that I was totally steroid resistant. It resulted in type 2 diabetes. I only used the turbohaler for three days and now I find myself with a major flare of my auto-immune problem. Since I used it my blood pressure has not been under 150/100. this morning it was 165/110. My b/s have been spiking all over the place. It is absolutely pointless going to the doctor as I already take five blood pressure meds every day. Because of my protein loss I suffer oedema which in turn leaves me susceptible to blood clots and strokes. When you add the high blood pressure to that it makes me feel very very temporary. I had advanced colon cancer 19 years ago and was not expected to live, too aggressive , too many lymph nodes. It has been 19 years of life threatening illness. I really don't think I can last much longer. Ron.
 
Hi all, been a while since I checked in. I'm feeling better overall after finishing Vitamin D therapy and upping the iron in my multivitamin. GI is sort of at a loss about my inability to eat (he still says, albeit unconvincingly, that I have an "IBS of the stomach.") Personally I want to push for some gastroparesis testing as I haven't had those specific labs and I keep wondering if there's something to be found there. In the meantime he put me on buspar (anti-anxiety med) in hopes that it increases my appetite and stabilises my weight (still dropping). And you know what—aside from severe vertigo, it is actually helping! I'm trying not to get too excited—I suppose could just be a placebo effect at this point—but I am soooo happy to feel actual HUNGER for the first time in a year!!
Unfortunately...my joints and costochondritis have been severely acting up. I went in to my GP hoping for some more MethylPred, and walked out with that and more—naproxen and muscle relaxers. I'll be sleeping like a baby tonight…

So, here's what I'm not so sure about: GP says I have fibromylagia. Does anyone have experience with this dx? Honestly what little I've heard about it isn't favourable…she kind of explained it as a last resort dx like IBS, and it seems like doctors don't discuss it very seriously…but hey. What do I know? I didn't want to go on ANOTHER anti-anxiety/depressant, so she referred me to a rheumatologist for some more specific auto-immune labs. I guess there are still some things to be worked up there that she didn't have access to. My GI also wants to do a MRI soon, so we'll see. Honestly I'm just glad to have another pack of steroids, sad as that sounds…it does wonders to stop my pain.

Hope everyone is doing ok. Maybe the shift of seasons will do some good :)
 
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I think I am having a reaction to the predsol suppositories. It feels like the sort of raw and burning I get when I use scented loo paper....any experiences with this?
 
I know, I know. I said I wasn't going to be posting around here anymore due to privacy concerns but right now, I just don't care. I'm upset. And I feel invalid again.

Just a quick update: to make a long story short, I moved out of my mom's house and was forced to get a part-time job to make ends meet (which is extremely difficult). If you all remember my posts, I was diagnosed last year with small bowel Crohn's and then "undiagnosed" after the inflammation disappeared after treatment with Pentasa. I've had several flares since and haven't had any scans since last summer. Only "recent" sign of inflammation was a slightly elevated calprotectin after a flare tapered off back in September. Saw a naturopath for a while but could no longer tolerate the meds. I have an appointment next month with my GI but I almost just want to say f it and just go on my merry way like there's nothing wrong. I feel like I'm crying wolf. I want to just forget everything but I know my problem is too serious. I just know they were right when they diagnosed me in the beginning. All of the pieces fit together into a nice little puzzle and then the next doctor I saw smashed that puzzle to pieces and said that's not your puzzle...

I'm still on Pentasa and it works sometimes but I had a flare just this past week. I can't gain significant amounts of weight and not because I don't want to (although repeatedly doctors have tried to accuse me of only having an eating disorder and severe IBS). I can self-medicate to the point where I can eat but I never keep on significant amounts of weight. I can eat maybe three things without upsetting my stomach: white bread, meat, and cheese. Everything else sucks.

Almost fainted at my job the other day. Doctor tested me for anemia and recurrence of my chronic hyperthyroidism today. Waiting for my results to come back negative again (maybe). I just don't know anymore. But I'm about to just call it quits because no one will help me or take me seriously. Stop the meds. Stop restricting my diet. Stop everything and just act like a normal person. Because it's clearly "not that bad".
 
Adadzio said:
Hi all, been a while since I checked in. I'm feeling better overall after finishing Vitamin D therapy and upping the iron in my multivitamin. GI is sort of at a loss about my inability to eat (he still says, albeit unconvincingly, that I have an "IBS of the stomach.") Personally I want to push for some gastroparesis testing as I haven't had those specific labs and I keep wondering if there's something to be found there. In the meantime he put me on buspar (anti-anxiety med) in hopes that it increases my appetite and stabilises my weight (still dropping). And you know what—aside from severe vertigo, it is actually helping! I'm trying not to get too excited—I suppose could just be a placebo effect at this point—but I am soooo happy to feel actual HUNGER for the first time in a year!!

Unfortunately...my joints and costochondritis have been severely acting up. I went in to my GP hoping for some more MethylPred, and walked out with that and more—naproxen and muscle relaxers. I'll be sleeping like a baby tonight…



So, here's what I'm not so sure about: GP says I have fibromylagia. Does anyone have experience with this dx? Honestly what little I've heard about it isn't favourable…she kind of explained it as a last resort dx like IBS, and it seems like doctors don't discuss it very seriously…but hey. What do I know? I didn't want to go on ANOTHER anti-anxiety/depressant, so she referred me to a rheumatologist for some more specific auto-immune labs. I guess there are still some things to be worked up there that she didn't have access to. My GI also wants to do a MRI soon, so we'll see. Honestly I'm just glad to have another pack of steroids, sad as that sounds…it does wonders to stop my pain.



Hope everyone is doing ok. Maybe the shift of seasons will do some good :)
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I think I have costochondritis at the moment - my ribs and back are so painful!! I have only Seen my physio about it and he said my intercostal muscles are a bit inflamed. Both Achilles are killing me at the moment and I have arthritis in my left ankle.

Finally have a surgery date to help my shoulder - four lots of cortisone injections didn't help for long.

I don't have a diagnosis Of fibro but some days I wonder if I have that too.

Good luck with the rheumatologist - hopefully they can help. I am running out of options with mine - see him next week to see what I can try next.
 
Reading everyone else's experience makes me feel bad, because I really am not that sick, and good because I feel validated. I am frustrated so many of you deal with physicians that blow you off or give you a catch-all diagnosis. Although, I do know people who have IBS (stress related diarrhea, sometimes certain foods without pain, no blood, no night time problems) and I have had many patients with fibromyalgia.

As for me, I am feeling okay. Yesterday I felt pretty good. I had some peanut butter in the afternoon that made me very bloated and I had some pain and cramping for hours after that, otherwise I was in almost no pain!! Today, however, I have pain in my URQ that showed up about a half hour ago and shows no signs of leaving.

I am glad to have found this forum, I have been feeling isolated, with no one to discuss my symptoms and anxieties with.
 
Sarah, I've experienced that feeling in flares as well, it's like I eat food and it just comes shooting out the other end without anything actually absorbing. In the worst of it, I'd stuff myself with potato chips just to try to keep some weight on, but I'd still end up losing weight anyway. I couldn't absorb calories nor nutrients, sometimes it seemed like I wasn't even absorbing water (I'd drink and drink but still end up dehydrated and needing IV fluids anyway). The good news is, if you can get things figured out and get on some treatment, that issue seems to go away. Once I started on steroid treatment, suddenly I could absorb my nutrients again and I gained my weight back. So keep working towards a diagnosis and treatment, and things should get much better.

Adadzio, it's great that you're doing better - the vertigo sounds awful, though. I'm probably biased, I feel like vertigo was the worst thing health-wise that I've ever been through. I had a 3-month long bout of labyrinthitis in 2014 - it's inflammation of the inner ear which causes horrendous, relentless vertigo. When it first started, I couldn't move my head without severe nausea and I couldn't really move without vomiting. Hubby had to help me to the bathroom, and even so I ended up puking a lot. When I regained my ability to walk, I had to use a cane for stability for quite awhile. My head was so spinny that my eyes would move on their own, I couldn't focus my eyes on things for awhile. At least in an IBD flare, I can do very basic things like get myself to the bathroom or make myself a piece of toast. I couldn't do anything during the worst of the labyrinthitis, it was utterly debilitating. So yeah, for me, vertigo as a side effect would mean that's definitely not the medicine for me! It sounds like you're coping though?

As for fibromyalgia, my understanding of it is like you said - that there aren't really tests for it, it's just sort of a diagnosis of exclusion. You have pain and they haven't found a cause for the pain, therefore it's fibro. It is very similar to the diagnosis process for IBS - they don't know what you have but they want to slap a label on it. Have you been checked for things like RA or Lupus? If they haven't excluded other possibilities, they really should before you accept a fibro diagnosis.

Gadget, welcome back but I'm so sorry to hear that you're doing so poorly. It really sounds like you need to seek out a new, better doctor. You know you're not crying wolf - you're legitimately ill and you need to find a doctor who takes you seriously. Don't call it quits, I'm sure you know that's unwise to stop your meds and safe diet. Don't punish yourself with worse symptoms just to prove a point - keep fighting and find a better doctor.

Ohio, you're definitely not alone! Glad to hear you had a (mostly) good day!
 
Bah, I spoke too soon! My belly hurts today, I had a (so far) single episode of urgent D. I was really hopeful that watching my food would manage my symptoms enough that I'd be able to carry on my regular life until I have answers. But, now I'm back to aching and tired. Sigh.
 
Ohio, I think I spoke too soon as well. I was doing pretty well yesterday, but today there's definitely rectal pain and pressure, it feels like I've formed yet another internal hemorrhoid. Which is incredibly frustrating and depressing because it's only been 3 weeks since I had my hemmies banded - I was hoping I'd have a little more time being hemmie-free, but I guess not. So I'm having a mini pity party for myself and eating all the things I shouldn't (I had 2 cookies and a donut just now, eek). So I feel for you, it's nice to have a short time of feeling good, but then to go right back to feeling the same old crappy way you usually feel, it's just so frustrating. It's like you get a taste of how good things can be but then your body says, Nope, that's not for you! I just want to curl up and cry but I am at work so I can't. So instead I'm eating terrible things and feeling sorry for myself. Bleh.
 
I wish my gut could make it's mind up! Today the D has once again settled a bit and things are much more normal, yet I still feel rubbish and I woke up with awful pain in my left hip and foot/ankle and of course the usual stomach pain and nausea. At the start of my gut problems I always had D then since about Christmas I've noticed things are a bit more normal again in that sense. It's not helping me with doubting myself that's for sure! But then if it's my small bowel that's pissed off and not my large then maybe that could have something to do with it? I don't know any more haha!

One problem I'm having over and over is this awful yellow coating on my tongue which comes with an increase in mucus in the bit of my throat between nose and throat. I'm constantly trying to swallow it down but it won't go, and it tastes nasty. I get it for like 3-5 days then it goes away for a bit again and so on. It's so frustrating!
 
Sarah it is good that the D has settled a bit but I know what you mean about everything else still paining! Be nice to wake up and find that gone too!

Cat wow you really do have bad issues with the hemmies. Sad that it seems to be developing more ☹️ that sucks!
 
sarah, have you noticed congestion or runny nose with that? Could it be environmental allergies causing post nasal drainage that isn't very fluid due maybe to dehydration?
 
Cat-a-Tonic said:
Sarah, I've experienced that feeling in flares as well, it's like I eat food and it just comes shooting out the other end without anything actually absorbing. In the worst of it, I'd stuff myself with potato chips just to try to keep some weight on, but I'd still end up losing weight anyway. I couldn't absorb calories nor nutrients, sometimes it seemed like I wasn't even absorbing water (I'd drink and drink but still end up dehydrated and needing IV fluids anyway). The good news is, if you can get things figured out and get on some treatment, that issue seems to go away. Once I started on steroid treatment, suddenly I could absorb my nutrients again and I gained my weight back. So keep working towards a diagnosis and treatment, and things should get much better.

Adadzio, it's great that you're doing better - the vertigo sounds awful, though. I'm probably biased, I feel like vertigo was the worst thing health-wise that I've ever been through. I had a 3-month long bout of labyrinthitis in 2014 - it's inflammation of the inner ear which causes horrendous, relentless vertigo. When it first started, I couldn't move my head without severe nausea and I couldn't really move without vomiting. Hubby had to help me to the bathroom, and even so I ended up puking a lot. When I regained my ability to walk, I had to use a cane for stability for quite awhile. My head was so spinny that my eyes would move on their own, I couldn't focus my eyes on things for awhile. At least in an IBD flare, I can do very basic things like get myself to the bathroom or make myself a piece of toast. I couldn't do anything during the worst of the labyrinthitis, it was utterly debilitating. So yeah, for me, vertigo as a side effect would mean that's definitely not the medicine for me! It sounds like you're coping though?

As for fibromyalgia, my understanding of it is like you said - that there aren't really tests for it, it's just sort of a diagnosis of exclusion. You have pain and they haven't found a cause for the pain, therefore it's fibro. It is very similar to the diagnosis process for IBS - they don't know what you have but they want to slap a label on it. Have you been checked for things like RA or Lupus? If they haven't excluded other possibilities, they really should before you accept a fibro diagnosis.

Gadget, welcome back but I'm so sorry to hear that you're doing so poorly. It really sounds like you need to seek out a new, better doctor. You know you're not crying wolf - you're legitimately ill and you need to find a doctor who takes you seriously. Don't call it quits, I'm sure you know that's unwise to stop your meds and safe diet. Don't punish yourself with worse symptoms just to prove a point - keep fighting and find a better doctor.

Ohio, you're definitely not alone! Glad to hear you had a (mostly) good day!
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Thanks, Cat. I appreciate it. And I know it's true. Got my blood results back from yesterday and I especially know it's true.

So my thyroid was fine but I am quite a bit iron deficient. Not anemic yet, but on my way there. It might be from heavy bleeding on my periods due to my birth control, failure of my small bowel, or both. I'm tempted to think my gut's got something to do with it. My fiancé works fast food and brings me home enormous burgers several times a week so the iron deficiency came as a surprise to me though not necessarily a huge surprise. If the blood loss is causing me to lose iron, perhaps my small bowel can't absorb the iron I eat to make up for it? I haven't been scanned since last summer when everything was clear. I have no idea what's going on inside me. Been having sharp abdominal pains and pressure lately and some swelling. It doesn't feel like bloating to me, it feels like I have swollen tissue pressing against my ribs and I still feel lumps in my abdomen...

But somehow this all isn't real. I had issues like that before with clear scans (the abdominal masses, anyway.) But it feels like pressure. It doesn't feel like cramping. It's either sharp pains or pressure.

Getting started on iron supplements and if they don't work, I move on to infusions. Yippee.
 
Dropping in to ask a quick question - does anyone know if it's possible to be allergic or intolerant to alcohol?

My stomach has been alright this week so I had one little drink this weekend and it didn't take two hours until I felt AWFUL. I get joint pains and a sort of flu-like pain in my body and just a general awful unsettled/anxious feeling. I've kind of always been like this when drinking but used to ignore it when I was younger. Now since I hardly ever drink at all my tolerance of it seems to have gone down even further.
 
Izzie, I'm not sure about the alcohol thing. I have a friend who cannot tolerate alcohol but in a different way than you described - 2 or 3 drinks is enough to make her super drunk (to the point of passing out and puking and not remembering anything), and once she had 4 drinks and ended up in the hospital. Her body just doesn't tolerate alcohol and she's always been that way. I don't think she gets flu-like pain or the other symptoms that you mentioned, though, she just gets extremely drunk on very small amounts of alcohol. Sorry that's not very helpful, that's the only knowledge I have of not being able to tolerate alcohol.

Gadget, I had 3 iron infusions late last year. They weren't too bad and they helped immensely (I had pretty severe iron deficiency due to chronic rectal bleeding from the stupid never-ending hemorrhoid situation). Can you tolerate iron supplements? The tablets are very hard on my stomach, but I've found that I can do liquid iron, so I've been doing that to maintain my levels. That's been going pretty well. I hope you can find a good solution for the iron deficiency! Let me know if you have questions about the infusions, if you do go that route.

Shell, thanks, yeah, the hemmie situation is not good. I've had recurrent bleeding internal hemmies for the past year now with no end in sight. It seems like such a stupid problem to have, I feel like a whiner because my main issue right now is "just" hemmies. But they've bled so much that I became iron deficient, they really are a literal pain in the butt! I just want them to go away but it seems like that's not happening anytime soon, ugh. The good news is that my new hemmie hasn't bled (yet). It's still there though, so I think I'm going to go back on the steroid suppositories (again) to try to heal the stupid thing. Just so sick of this.

You guys, just so you know, I'm here for about 1 more week, then I'm going to be away from the forum for close to a month. I'm going to Japan and I'm going to essentially be off the grid there (no phone, and free wifi is apparently not common in Japan, so I essentially won't be reachable online). I'll post lots of photos and updates when I get back!
 
Cat-a-Tonic said:
Elephant, I know that B12 is mainly absorbed in the terminal ileum, so I would imagine that you have to have something going on there. For what it's worth, they've never found anything in my TI either, but that's where my main "pain spot" is, and I have to supplement B12 or it drops too low. So I have to presume that I've got some TI involvement, but it's never shown itself visually nor on biopsy. Sometimes this stuff just likes to hide REALLY well.
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Thanks Cat. Yeah my TI was "normal" according to the paperwork with pictures they gave me. Oddly enough, I missed the stupid phone call from my GI office today and by the time I called back they were closed. They have my results, but I guess I'm waiting another day to hear about them. :ymad:
 
Elephant, I hope you can get answers right away tomorrow! And I hope those answers are worthwhile. Would this be your biopsy results? Keep us posted, I will think happy thoughts for you!

Speaking of waiting for answers, I've apparently become desperate for answers when it comes to this incredibly annoying ongoing hemorrhoid issue. I wasn't planning on seeing the colorectal surgeon again as she was pretty dismissive, but, given that I have a new hemmie only 3 weeks after having the last bunch of them banded - I emailed the colorectal surgeon in desperation asking what else can be done besides more steroid suppositories or further banding, since both of those options have clearly failed me. So now I'm waiting to hear back from her to see if she has any ideas. I'm not super hopeful though.
 
Izzie, you can be allergic to a component of alcohol (hops, barley, etc) or have a hystamine reaction to alcohol (I have this, I break out in hives). I have not heard of the symptoms you have either way. The auction, if it is an allergy, is to avoid alcohol. So...you can start there.

I have been feeling like crap today. I woke up with D and have been having sporadic gut clenching pain and cramping all day. I dragged myself to work to discover I have a trainee this week. So I had to do my best. It was like my 85%. But took 110%.
 
@Cat-a-Tonic I hope you have a great trip, and that everything health-wise will be stable!

@OhioRyan Yeah, I hardly ever drink, to be honest. I do have similar joint pain in other situations (when it's particularly drafty or cold and humid outside) so I think it might be some autoimmune reaction. Still, I don't exactly enjoy drinking so I should get better at saying no in social situations :) Sorry you're feeling crappy, and at work no less! It sucks having to perform when you're feeling so blah.

I'm doing alright. Nervous about my upcoming tests. Or rather, nervous that they won't show anything. The usual. Have some time off currently and I find that having less to do so that I can actually cook my meals, not stress, exercise etc. is doing wonders for my mood. My stomach is the same, really, though it's easier to control when I have the time to plan meals, but mentally not being stressed all the time is just great.
 
Cat-a-Tonic said:
Adadzio, it's great that you're doing better - the vertigo sounds awful, though. I'm probably biased, I feel like vertigo was the worst thing health-wise that I've ever been through. I had a 3-month long bout of labyrinthitis in 2014 - it's inflammation of the inner ear which causes horrendous, relentless vertigo. When it first started, I couldn't move my head without severe nausea and I couldn't really move without vomiting. Hubby had to help me to the bathroom, and even so I ended up puking a lot. When I regained my ability to walk, I had to use a cane for stability for quite awhile. My head was so spinny that my eyes would move on their own, I couldn't focus my eyes on things for awhile. At least in an IBD flare, I can do very basic things like get myself to the bathroom or make myself a piece of toast. I couldn't do anything during the worst of the labyrinthitis, it was utterly debilitating. So yeah, for me, vertigo as a side effect would mean that's definitely not the medicine for me! It sounds like you're coping though?

As for fibromyalgia, my understanding of it is like you said - that there aren't really tests for it, it's just sort of a diagnosis of exclusion. You have pain and they haven't found a cause for the pain, therefore it's fibro. It is very similar to the diagnosis process for IBS - they don't know what you have but they want to slap a label on it. Have you been checked for things like RA or Lupus? If they haven't excluded other possibilities, they really should before you accept a fibro diagnosis.
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Ugh I know, vertigo is the worst!! I called the office last week and he was able to cut my dose to just nightly—that way I can sleep off the dizziness. So far, much better. I also spoke too soon about the good effects of the buspar—guess the increased appetite was a placebo effect, because I'm back to square one! Ah well.

On another note, methyl prednisone is driving me nuts. I never had mood swings on it before! It hasn't helped with the blood/mucus in my stool this time either. Thank God I'm almost done with this round :eek:

I have been checked for both RA and lupus. Waiting to see the rheumy in May…fun wait! My GP did say the rheumy can run other auto-immune tests before I decide to start fibro treatment. So, holding off as long as I can I guess. We'll see…

Hope everyone else is hanging in there. I find the warmer weather nice, of course…on the other hand, it's kind of depressing to realise it's been a whole year of feeling really sick. :yfrown:
 
Cat-a-Tonic Gadget said:
Have fun traveling, Cat! Japan sounds amazing. In response to your question, the supplements seem to be making my stomach feel pretty terrible. I was warned about "constipation" but that's not my issue in the slightest. Had some d today, a lot of stomach pain and some nausea. Very little appetite.
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Gadget, yeah, that's what iron tablets do to me as well - tons of nausea and stomach pain and I also get worse d from it, no constipation here either. The liquid iron has been much easier on my stomach. The first couple days on it were a bit rough, but my body adjusted pretty quickly and now I can take the full dose (1 tablespoon) with zero issues. So if you haven't tried liquid iron, I encourage you to give it a try. It's easy and it's cheaper than the iron infusions (after insurance, I am paying $124 out of pocket per infusion and I had 3 of them, so they weren't cheap - before insurance they were almost $1000 each).

Adadzio, if it makes you feel any better, it's been 6.5 years for me and I still don't have solid answers as to what's wrong with me (we've ruled out most other things and I respond well to IBD meds, so it pretty much has to be some type of IBD, but we're not sure which one or where it's located, etc). I have an aunt who had symptoms as long as she could remember, and she didn't get diagnosed until she was in her 50s. I just hope I don't have to wait *quite* as long as her to get a proper diagnosis, eek! I'm sorry to hear it's been a whole year for you, but you hopefully have gained a lot of knowledge in that year and at least have some confidence that you know what it's not and you have narrowed the list of suspects as to what it is, you know what you can & cannot eat, you've tried some meds and know whether or not they work, etc. You've gained some pieces to the puzzle, you haven't just stagnated this past year. I know that doesn't make it seem much better, but hopefully soon you'll get that final puzzle piece that will give you a diagnosis.

Izzie, did you ever hear back from your doctor? Will you be allowed to take your meds as usual during your upcoming tests?

Ohio, I've had many days like that as well so I know just what you mean. There have been days when I've basically just cried at my desk the entire day while gritting my teeth and pushing myself to get through it. I saw this thing online somewhere, it was a little virtual award that said "Cried but did the thing anyway." I feel like there are many days when I deserve that award! It sounds like you deserve the award as well for getting through that tough day. So here is an award from me to you. :)
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How's everybody feeling today? I'm not great. I had to cross another food off of my "safe" list yesterday, that's never good. I had been able to eat blackberries just fine for years - sometimes they're on sale for super cheap at the local grocery store, and I'll buy 4 or 5 containers of them and scarf them down. They've never given me any issues in the past. Until yesterday that is! I had a small handful (like 8 - 10 blackberries) in my oatmeal yesterday. Then, yesterday evening, I got hit with cramping and urgency, so I ran to the bathroom. I ended up passing a whole bunch of undigested blackberries. You know how they're like, a bunch of little spheres in a cluster? I passed a bunch of little unconnected spheres - other than being individual and not in a cluster, they looked just exactly the same as when they went in, they were not broken down at all. So I apparently cannot digest blackberries at all anymore, that's just great (they were on sale again so I have 4 containers in my fridge right now, ugh - I think hubby's going to be eating all of them). So yeah, that wasn't a fun time. I still have a hemmie as well (weirdly though this one hasn't bled at all which is unusual for me) so I put myself back on steroid suppositories last night. Bleh. I hate being on them but I don't really have any other good options right now. Still waiting to hear back from the colorectal surgeon, she hasn't replied to my email yet.
 
Cat- yes. my biopsies. I was told today that "everything was normal"
Does this mean that I DO NOT have Gastritis/ Barrett's Esophagus? Or does this just mean that I don't have a deeper lying issue? It was just the nurse who called me, and I didn't even bother asking her as I have a follow up appointment in about 5 weeks. Not sure what we are "following up" with, but I'll go.

Still no answer for the horrible constipation I've had my entire life. Doc wants me to take TWO packs of Miralax a day. I don't feel comfortable taking a bunch of meds every single day. Even when I take the Miralax, nothing happens for DAYS. (3 or more). But since my Scope was clear, I'm assuming it's just my body. I still think my thyroid numbers are a little low, but I'm seeing my ENDO in 5 weeks too, so I guess we'll see.
 
Okay, I think it is time I join this thread. Nothing new happened in the recent past to spur me on to want to post now, but I have just gotten to a point where I am so frustrated with my health that I have to vent. I won't bore you with all of the details because it would take pages (especially if I add the non-gastro components), but suffice it to say that I was diagnosed with IBS a few years back and have come to wonder more and more if that diagnosis is accurate and if I actually have an IBD. My husband, Doug, does have Crohn's and because of that I have participated on this thread for quite a while myself in other areas. In the gastro area, (in addition to the GERD and constant diarrhea that I have had for years) I was diagnosed with gastritis and esophagitis a few months ago and ended up losing about 30 pounds in a short period. That seems to have resolved to where I am able to eat again for the most part, but for some reason meat and protein repulses me now for the most part when I used to be a meat-and-potatoes gal. During the worst of it, (where I was nauseous, bloated and throwing up occasionally) I think that I ended up with a small partial obstruction which resolved the day before my test for an obstruction. I also have my share of "hemmies," which sometimes bleed, but I have never been anemic to my knowledge. I also suffer from arthritis problems and extreme fatigue but have been diagnosed with narcolepsy. My family seems to have its share of gastro problems, including my dad who has either crohn's or colitis, but is so private even his current wife doesn't know which one. I also have siblings who have had polyps frequently and therefore are checked frequently, (always to remove more) so there seems to be some genetic component.
I hope you don't mind my carrying on here, but it is nice to have an outlet even if no one reads this. I hope all of you have your medical issues resolved and/or controlled as best as can be. It stinks not being well.
Cat, I'm happy for you that you will he able to get away for a while on an adventure. I hope you have a marvelous time. I have a brother-in-law who spends a lot of time for his work in Japan, and he loves it there.
 
Elephant, I think you should call your doctor and ask specifically about the implications of the biopsies - I'm not sure myself, but I would imagine that if they visualized Barrett's and gastritis, then you surely must have those regardless of what the biopsies found? Your doctor should be able to clarify and should also hopefully be able to give you some direction (besides just more Miralax) for the next 5 weeks. I'm so sorry to hear that everything was "normal" - I know that feeling well, the incredible frustration of being told that everything's normal when you know very well that it's not! I'm so sorry, I wish there was more I could say to take away the frustration. I hope the next 5 weeks are quiet health-wise and go by quickly and that you can get some answers at those next appointments.

Hi Sandy, I'm so sorry you've had to join us! I've definitely seen you around the forum but I didn't know that you were having issues of your own, poor thing. It definitely sounds like it has to be more than IBS - with the joint pains, the fatigue, the unintentional weight loss, the family history of IBD, the possible obstruction - that all sure sounds to me like IBD fits really well. I will admit though that it's a new one to me that you're suddenly repulsed by meat and protein! I haven't heard of that before, I hope you can get it figured out. I seem to be the opposite, although I also seem to be in remission right now so maybe that's why - I've had some meat cravings lately (I'm not normally a big meat eater but I have been devouring lamb and venison), and I am actually currently eating potatoes. All I can think is that the body sometimes knows what it needs (or doesn't need) so I would listen to it and avoid meat & potatoes for awhile. Do other protein sources also put you off right now - things like eggs or cheese or peanut butter?

And thank you, I am really looking forward to my trip! I think it will be an amazing adventure, I've heard nothing but good things about Japan. :) I'm slightly freaking out about packing - there's just no such thing as packing light when you have chronic illness (I'm bringing about 7 prescription meds and a few supplements with me, plus I've read that not all Japanese bathrooms have toilet paper because the toilets all have bidets, so I'm bringing lots of tissue and wipes, I'm also bringing 2 different hemmie creams with me, and so on). And we'll be there for 3 full weeks so I have to pack enough meds, wipes, etc to last for 3 weeks, not to mention clothes (although I'm definitely going to do laundry there at least once if not twice, so I know not to pack 3 weeks worth of clothes). So yeah, if I can manage to fit all my stuff into one suitcase, I'll be astounded. :p I'm going to spend all weekend packing and re-packing and re-assessing what I need to pack and possibly sneaking out to the store to buy a larger suitcase. :p
 
Elephant, I definitely agree with Cat regarding the meds for gastritis. When I was diagnosed with gastritis they put me on the same meds as they give ulcer patients ( the name ecapes me at the moment as I have been on so many meds) and it definitely helped more than miralax.
Cat, my gastro had never heard of an aversion to meat either, but I also believe in listening to the body and try to eat according to what I believe is good for me and what my body is telling me it wants or does not want. For a while, I ate a lot of soda crackers and applesauce, and not much else. The good thing that happened during this time is I quit my bad habit of a lot of diet coke, which I know is really bad for you. My stomach absolutely could not handle it, and I had wanted to quit for many years previous. In answer to your question, meats were (are) the least tolerated, eggs slightly better and peanut butter the easiest, tho I'm a lot better with this than I used to be. It is just opposite of the order I used to prefer them.
Regarding your trip, I would be just like you, packing multiple meds and wipes and tissue. It sounds like the trip of a life time, tho, and I really hope you enjoy it.
 
Sandy, I'm glad to hear you were able to kick the soda habit, I am guessing that soda wasn't doing your stomach any favors! I had to quit soda and coffee as well when I got sick - any caffeine seems to go right through me and it also triggers migraines, and carbonation gives me a horrendous case of the burps and can also give me that trapped gas type of pain. Not good, so these days I mostly drink water. I even gave up herbal tea, as I read that tea can inhibit iron absorption, and I need to absorb all the iron I can get. So yeah, just water for me these days but that's okay.

I'm glad to hear you're still able to eat some protein. Don't overdo it on the peanut butter, my husband apparently got kidney stones that way (he was eating an exorbitant amount of PB every day, like he'd take 2 or 3 bananas and slather tons of PB on them and that would be his breakfast most mornings). As long as you don't overdo it, you should be fine, and PB is rich in calories as well so that'll help you regain some of the weight you've lost (presuming you're trying to regain the weight you've lost).

I'm glad I'm not alone in packing tons of stuff related to my illness! I counted this morning and there are 7 prescriptions I'm taking with me and I currently have at least 2 supplements I know I need to pack - I'm trying not to bring too many supplements and hoping I will be okay with going 3 weeks without taking them (I'll just try to get sun exposure for my vitamin D, try to get other things through dietary measures, etc). It definitely is going to be the trip of a lifetime. I'm getting nervous - I want my health to behave and I'm also slightly nervous about the language barrier (I do not speak nor read Japanese - I can say a few words/phrases like hello, thank you, where is the bathroom, but that's about it). I think it'll be good, though - once I get over the jet lag I think I'll be okay (my guts don't like it when my sleep schedule is interrupted so the first couple days might be rough). And I've heard that most people in the big cities can speak at least some English and that many signs etc are in Japanese & English. If I get lost on the trains or whatever, I'm just going to try to look at it as an adventure and not a bad thing. This whole trip is going to be one big adventure. :) One week from now I'll be in the airport, waiting to board my flight! I can't wait!

In case anybody is wondering, "Toire wa doko desu ka?" is Japanese for "where is the bathroom?" :) That was the first phrase I learned - I made darn sure to memorize it!
 
I've heard that almost everyone speaks some English in Japan as well. You're going with a good attitude, so you should be fine and have a great trip.:kiss:
 
Cat I hope you have a great time in Japan, it sounds like it will be amazing! I totally get the packing trouble, I went away for a weekend recently and ended up packing too much because of the what ifs that come with chronic illness haha!

My mum is basically convinced my GI troubles are coeliac and that if I have the upper endoscopy I will come out with a coeliac diagnosis in the end. I'm still on the fence to be perfectly honest. I have symptoms of both Crohn's and coeliac but so far my tests haven't screamed either which is so frustrating. I did read that coeliac can cause peripheral neuropathy and things like tingling in hands and feet, I do get some tingling in my hands but I always put it down to POTS but then read that peripheral neuropathy can cause problems with the autonomic nervous system which is what POTS is, so now I'm even more confused. Would coeliac cause the inflammation seen on colonoscopy and biopsy? Or is that unrelated? And surely if it were coeliac I could tie it to eating gluten by now? I mean, I have gluten containing foods every day and generally more than just the once, but I've never noticed a pattern of eat a bowl of pasta and symptoms get loads worse the following afternoon/evening/day or whatever.

I've been feeling incredibly weak the last few days and having awful night sweats and feeling too hot at night. It is driving me mad and I don't know if the extra fatigue and weakness is the uninterrupted sleep or malnutrition progressing basically. I'm trying to make an effort to eat a bit more especially if I have an appetite but it's hard, I get full so easy. Also my joints today are awful, specifically left leg joints. Maybe we are in for rain or something!
 
I haven't spoken to the dr yet, no, but I'm not having the test until mid-April so there's a while left before I have to really worry about it. It's funny though - I missed my pill tonight, or rather forgot to take it when I usually do, and only noticed beccause I started belching like crazy.

That's when I'm a couple hours late taking a pill. 10 days is going to be impossible. It's strange though, I don't necessarily feel heartburn when I miss a pill so much as just start to belch uncontrollably. I'm concerned that the belching is not a symptom that will show something on the pH test, though I guess the reason I belch is probably reflux, even though I don't get the burning in the throat?
 
Called my GP today to tell her how badly I was reacting to the iron tablets and she told me to stop taking them. She suggested the possibility of Crohn's activity being a potential causal factor in the iron deficiency and to follow up with my GI. At first, she was more concerned about the heavy periods but when I mentioned the "d" word, everything changed. I have a follow up on the 7th with my GI and due to my past experiences with doctors, I'm just worried I'll get more of the same BS they've been giving me. But the iron deficiency took me enough by surprise that maybe I'll be surprised when the Crohn's decides to make itself visible again? I wish I were a prophet. Doctors will have to do good enough.
 
Sarah, have your mother and mine been comparing notes? That's exactly how my mom was when I first got sick (and weirdly she still is like that). When I became ill, I mentioned to her that my doctors thought it might be something like Crohn's or celiac. She apparently mentioned that to some weird distant cousin, and this cousin has celiac so she convinced my mom over the phone that it must be celiac. My mom then decided on her own that if I have celiac, that she must have given it to me, so she must have it too - so she self-diagnosed herself (even though she had no symptoms) and convinced a few other people in the family to go gluten-free along with her. Then, I had multiple tests (blood test and 2 upper endoscopies w/ biopsy) and my tests all came back clear - my doctors all agree, I definitely 100% do not have celiac. But my mom is slightly crazy, she still thinks she has it and she's been gluten-free to this day.

To answer your questions - I don't believe celiac can be detected on colonoscopy. The "gold standard" for diagnosing celiac is the upper endoscopy (also known as gastroscopy) with biopsies. If you do have celiac, they'd either see visual evidence of it on the scope itself or they'd at least see it on the biopsies. It's not something that hides as well as IBD can hide. So probably your best option to confirm or rule out celiac is to keep eating gluten for now, and have the upper endoscopy and make sure they take lots of biopsies. That will let you know either way whether you have it or not.

I don't know enough about POTS to say what symptoms can be attributed to which illness - I hope you can get things figured out. I feel for you, it's always so much more confusing when you have multiple chronic health issues and need to sort out what's causing which symptom! I hope things calm down soon and that you can feel at least somewhat better.

Izzie, for the pH test, from what I remember, I had to wear a belt contraption (similar to the pill cam) with a little computer recording thingy in it. It recorded not only the data from the NG tube, but also I could push a button on the box to record that you're having a particular symptom, then I'd write down the specifics of the symptom(s) in a journal that they gave me. So if I belched, I would push the button and write it in my journal. I'm presuming it'll be similar for you, so yes, long story short, there will be a way to record your belching during the test.

Gadget, are you going to have the infusions then instead of doing the tablets? You obviously can't just let the iron deficiency go untreated, so hopefully your GI will be able to either get you on infusions or liquid iron. Hang in there, hopefully things will go well on the 7th!

How's everybody today? I'm meh. I still have that new hemmie, I think I'm on day 3 now of being back on the steroid suppositories. I think the hemmie has shrunk a bit (it's right inside the anus so it's in a very uncomfortable spot, but there's less discomfort today). Oh, and get this - so I had emailed the dismissive colorectal surgeon. I am definitely firing her as a doctor. I had just emailed her saying that I formed a new hemmie only 3 weeks after getting the last batch of them banded, and asking what my options might be now because obviously banding didn't do what I hoped and I don't want to be on steroid suppositories forever. I figured she'd just write a brief response with a few options and then I'd do some research online and we'd go from there. Nope! Her response was this: "We would be happy to see you in clinic to discuss other options." Ugh! Yeah, great, don't help me, that's perfect. I'd love to wait another 4 months and pay $200 out of pocket to have an appointment with a dismissive b-word of a doctor. No thanks. So the plan now is, I'm going to ask my GI for a referral to a different colorectal surgeon. If I'm going to wait 4 months and pay for an appointment anyway, I'd much rather see a different doctor than her.
 
Yes, they are basically leaving the iron deficiency untreated until I see my GI. I've looked up liquid iron supplements and they're all quite expensive, I don't want to invest that much money in something that I don't know will work or may have an ingredient in it that'll make me poop myself, I'm already mad about the $3.50 I spent on the pills and am going to try and get it back. But if I almost collapse again, I'm going to the hospital, and they better not send me away with a scrip for tramadol which is all they do when I go to the hospital.
 
So, since I was still having pain every stinkin day I decided to have dairy and gluten. And after a day and a half I felt terrible. Bloated, nauseated. Gross. ALso, still pain. So back to no gluten and dairy.

And, I fell in the shower yesterday and hurt my foot. So, I'm on crutches! It's always something.
 
Gadget, I buy my liquid iron on amazon and I think it is only about $12 for a big bottle? But if you can get the infusions instead, then it might be best to wait. $12 might be worth it though to not collapse! I hope you do okay until your appointment. Hang in there!

Ohio, that sucks about hurting your foot on top of everything else! I hope that heals up quickly. And as for eating gluten and dairy together - if you try those foods again, you might want to try them one at a time, not together. That way you'd know for sure whether they're both trigger foods, or just one of them. Feel better!

My GI is awesome, especially compared to the crappy colorectal surgeon. I had emailed my GI's office this morning asking for a new referral to a different colorectal surgeon. His nurse responded right away, saying that my GI is on vacation right now but she'll put the new referral into the system so that all he has to do is sign off on it when he gets back, and she's also going to let him know how dismissive the colorectal surgeon was. I love having a responsive medical team that actually helps. My GI and GP are both pretty awesome. Now I just need to find a better colorectal surgeon!
 
I have had eight endoscopies for various bouts of peptic and duodenal ulcers and severe gastritis. About three scopes ago my gi came to see me in recovery. He looked worried and told me he was 99% sure that it was stomach cancer. He said my gut looked like the surface of the moon. Fortunately he took multiple biopsies and waited for the results before doing anything. A few years earlier my then doc refused to give me a script for somac or nexium . he said my previous scope was 18 mos ago and he could not justify the meds. My biopsies came back as severe ulceration. My gi was surprised but he said I may still lose my stomach if the ulcers did no resolve. He put me on 40mg daily of somac ,for life . He warned me never to stop taking them or I would face serious problems. He did another scope after six months and things had healed. I had another one two years ago and things were still ok. Sometimes I do wonder what heavy doses of proton pump inhibitors are doing to the rest of my body.
I got some more bad news last week. I saw my gp for scripts and mentioned I was having breathing problems. I was dxed with severe asthma in hospital a few years ago. My gp did spirometer tests. Ventolin made little difference to the results. He does not think it is asthma but copd. He also threw in fibrosis and pulmonary hypertension as possibilities. He prescribed Spiriva. I read up on it, it can cause severe nephrotic syndrome of the kidneys. I already have severe nephrotic syndrome being treated with cyclosporine. My nephrologist does not want me to take it till I see him. I think he wants to try and make sure the diagnoses is right before we 'lets try' something that could kill me. Ron.
 
Random question: does anyone else get severe chills while eating? Like, shivering uncontrollably, teeth chattering, feel like they got doused with ice water?

It's been happening more and more with me, to the point where if I eat anything the slightest bit cold, my body goes haywire! I'm assuming it's just my general sensitivity to temperature, being somewhat underweight. It's just frustrating, as my eating has been going really well lately—it's just these moments that make me want to crawl under a blanket! Any tips on how to keep body temp steady?!
 
Adadzio, normally I have had the opposite problem, I'm extremely sensitive to heat, but when I was at my worst a couple months ago or so with GI problems, I would randomly go into the chills also. I never associated it with when I was eating, but I was drinking a ton of ice water at the time trying to keep hydrated as I had constant diarrhea, much more than what I was eating. I lost a lot of weight at the time, though I'm not exactly skinny. So maybe? Anyone else?
Today some of that ol' nausea seemed to be creeping back, but I'm hoping that was just a fluke and tomorrow I'm more my normal again. (My normal is never normal for the average person health wise, tho.)
Hang in there all.
 
Adadzio, I haven't had that with eating specifically, no. But for me, in a bad flare, particularly at the start of the flare, I will get horrible chills immediately after a bowel movement. I don't know why - it just seems to be a flare thing for me. But, the weird thing is, when I take my temperature, it's always normal or a little below normal. It feels like a fever but it's not, it's super weird. I have no idea why it happens or what's actually going on that causes these chills. I have just come to associate it as being yet another fun flare symptom. Sorry that's not very helpful. Definitely something to mention to your doctor though!

Sandy, I got a chill just thinking of drinking ice water in a flare! Brr! I can only drink room temperature water in a flare, cold water will give me awful stomach cramps (heck, sometimes it cramps me up even when I'm in remission!). May I ask, was there a particular reason you were drinking ice water rather than room temp? Does the coldness of it lower inflammation or is it just your personal preference to drink cold water?

As for me, I'm not great. The stupid hemorrhoid hasn't healed yet, if anything it's gotten worse, and yesterday it decided to start bleeding. So I passed blood 3 times yesterday evening. Nothing so far today, but I had a small bowel movement this morning and it REALLY hurt. Bleh. I'm in a fairly foul mood. I always get so depressed when I poop blood - it's like, my body can't even do something so basic as to hold on to the thing it needs to live. I just feel broken in a very fundamental way, I can't rely on my body to reliably do the basic things that are needed to sustain life. It's so stupid and I hate it.
 
Regarding ice water, normally I prefer room temp, but I was having extremely strong cravings for chewing ice at the time. I found an article in the New York Times that I took a screenshot of (part of the article), as it wouldn't let me cut and paste to quote, but I believe explains what happened very well.
I might not be back for a few days as my father just passed away this morning, but want to wish all a happy Easter. Cat, hope your travels go great and stress free.
Hope all of you stay or get well.
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Cat it sounds like they could have been haha, although usually the focus for my mum is lupus as she has that and symptoms started about the age I am now! It's complicated with my mum though, she swings between saying I need to just suck it up and get on with it and being angry that the doctors are taking so long to sort things out and not taking the weight loss seriously etc. Also with the lupus often when I'm having a bad day and struggle to function, if she wants to say do the shopping and I say I can't she pulls the "I have lupus and am sicker than you but I'm still managing to do the shopping" act, she never explicitly says it but it's definitely the gist of it! Winds me up so much, like yes I get it, lupus is awful, but when she's taking her medication correctly it's pretty well controlled and she even works more than I do. It's hard work.

I know the gold standard to diagnose is the upper endoscopy with biopsy and not colonoscopy, the thing I'm wondering most is whether the inflammation they found could potentially be related to coeliac or whether it would be something else. Google isn't being much use so far though. I also kind of wonder whether the upper endoscopy biopsy would show Crohn's potentially or whether the way it's processed would only show coeliac or no coeliac. I guess time would tell.

I'm sorry the new hemmie is giving you so much trouble so close to your holiday! I bet that is the last thing you needed!

Is everyone enjoying the Easter weekend? I managed to spend some time with my best friend and her two kids today which was lovely, then tomorrow I am booked in for a hair cut. All that's left to do is find something to do on my birthday Wednesday :) It's been tricky to find something spoonie friendly and tummy friendly which is affordable and close enough to home that I won't exhaust myself getting there!
 
Hi everyone!

My name is Andy and I'm a teaching assistant who works with children with Special Educational Needs. I've joined the forum to get some advice really. I've been having issues with my digestive system since I was 18 (I'm now 35). I'm now at my wits end with it all and could use some advice.

For years the docs have been saying I have IBS but I feel that this has been an easy diagnosis for them and each time I visit the GP now it's clear they just read my notes and dismiss me.

I started in 1999 with chronic diarrhoea, stomach pain and urgency. I was sent for a sigmoidoscopy which was clear and a barium X-ray which was also clear. I never got any diagnosis at this point.

Fast forward two years and the symptoms persisted intermittently and I was constantly trying to figure out if foods were causing it but could never clearly figure out which, despite food diaries etc. I never got any support from the GP. When I moved to Uni it got so bad that my campus doctor gave me a permanent sick note so I could miss any lectures when I felt ill. I had this for the full three years. He gave me the diagnosis of IBS but I never had any more tests for him to make this diagnosis.

To cut the story short, the symptoms continued until 2012 with many more GP visits in between, at which point I demanded to be referred to the hospital to see a specialist. When I saw him, he did no tests and again was judging me based on the IBS diagnosis from 2001. He looked at the food diary I had been taken and suggested that wheat / gluten may be a trigger or issue. On his advice, I cut all gluten from my diet. This did have a massive impact in my health and apart from the odd small flare up I was almost symptom free from July 2012 to July 2015.

In July 2015, it all started up again but even worse. I was having bouts of severe stomach pain, loose BMs but felt constipated and actually passed out with the pain on two occasions. I was seeing yellow floating BMs in between bouts of constipation. I saw a small amount of blood, but my GP said not to worry as I had a couple of haemorrhoids that could have caused it. In September 2015, I collapsed in the bathroom. I woke up to more severe pain then on managing to pass motions, I passed a large amount of dark red blood. I was sent to hospital by my GP that morning and admitted to an assessment ward. I was physically examined by a doctor, blood tests were taken but they discharged me the same day saying I should go to the GP if symptoms continued.

I was still bleeding for a week and felt awful. I was urgently referred for a colonoscopy, but my GP changed this to a sigmoidoscopy for some reason. This test came back normal. I have had two more bleeds, though not as severe, since then.

So today, I'm still in pain daily. I'm taking Colofac MR twice daily (for spasms) and amitriptyline 35mg daily for pain. Neither medication is fully working. I don't have loose BMs anymore but the pain persists and is getting worse. I wake up every night in pain as I can't lie on my front or back. A new one this week has been very sharp pain in my upper middle stomach when breathing in, which is worse after food and when I lie down. Also hurts a lot if it's pressed. I have also developed a perianal abscess which is recurrent. It has drained itself 4 times now. Two doses of high dose antibiotics have not cleared it up.

Sorry for the long post. I'm due to see my GP again on Wednesdsy morning and I'm just looking for advice on what to say to him. I really feel some further tests may be needed.

I appreciate any advice people can give.

Thanks

Andy
 
Hi Starnett/Andy,

I'm sorry to hear you are so unwell. I'm quite shocked about what you wrote. I had a long journey to a diagnosis but yours so for must have been horrible already, so I really feel for you.
If I were you I would insist on seeing a specialist for IBD. Bleeding to that extend does not sound like IBS at all. IBS is an exclusion diagnosis, colonoscopy (not sigmoidoscopy) has to be performed, you might want your stomach to be checked as well (gastroscopy, Crohn's can occur anywhere in the digestion tract). Those who offer these scopes are not always those who know where to take biopsies and the results turn out to be false-negative in terms of IBD (experienced that myself).
Gluten can help alleviate symptoms for IBD as well, but of course, it could be celiac disease in addition. You could get a genetic marker checked, if you don't have it it can't be celiac, if you have it you might have celiac. For a proper diagnosis of celiac you would need to eat gluten again, for at least 3 full months and not in small amounts, then have a gastroscopy with special biopsies of the duodenum.
I would definitely recommend to look for a good IBD unit/centre, get a referral and if your symptoms get worse, go to their A&E and not to your local one. The longer your symptoms stay untreated, the harder it can get to control the disease when it's diagnosed (at least my doctor told me that, same applies to me).
 
Thanks for your message and support. I will be taking your advice and looking up any specialist centres for IBD before my appointment on Wednesday. I think the problem is you always feel like they should know best when you go the the GP and you feel like you're not allowed to make suggestions or have an opinion.

I'm starting to realise though that this is my body, I know something is not right and it needs to be sorted out. If it turns out I don't have IBD that would be marvellous but there is something going on.

I will let everyone know how I get on.

Andy
 
Hi all, just a quick note to say goodbye for now! I won't be on the forum for about a month - heading to Chicago tomorrow, then flying to Japan for my trip. :D I will tentatively be back on the forum the last week of April. I'll have lots of photos and stories to share when I get back!
 
Greetings!

I have been on a journey for a number of years now. By my thoughts over 20 years. I have had periods of intense pain in my stomach and then periods of nothing.

My recent bout has me so frustrated. A year ago, I started getting a lot of pain in my lower right ab. The pain was intense at times and mild at others. I started experiencing bounts of dizziness, nausea, pains, tinglings in my feet and hands, the big D (for weeks at a time), there are only two times that I have seen blood in my stool. The pain and fatigue started to get worse and worse.

A year later, i have been through every test they could think of so far. My bloodwork comes back great. The only blood work issue has been the instability of my bilirubin.

My endoscopy shows that gluten possibly tears my system apart (although they cannot prove i have celiac). There was a CT scan that showed a thicking in my small intenstine, but they tried a different test and could not find it again.

Long story short, I am sitting here today completely lost with all these doctors. my GP have sent me to an Endo, a Rhuemotologist, a GI, and allergist, a Neurologist, and a Urologist. They all have found nothing. They can see I have symptoms and am in general discomfort, but they can find nothing wrong. One doctor wanted to try to give me antidepressent meds. They removed my appendix (even though they said I may not need to), but the pain didn't get better.

My Symptoms to date:
1. Pain in my lower ab. Cramping and such
2. Pain in my lower right ab that streches upmy side to my rib and around to my back. It literally feels like someone has grabbed my side and is squeezing the life out of it.
3. Tingling in my hands and feet
4. Dry eyes
5. Headaches, dizziness, and lightheadedness
6. dry mouth
7. Extreme Fatigue
8. Low Testosterone (The Endo said there is absolutely no reason I should have this)
9. pain in my joints
10. diarrhea
11. Nausea (I have come very close to throwing up, but have not as of yet)
12. My stool is very very pale
13. I have a mildly enlarged spleen
14. They say I may have GERD
15. They found a small hiatal hernia
16. I am extremely lactose and gluten intolerant (Not allergy related)
17. I do have allergies
18. I am banana and Mustard intolerant (allergy related).
19. Brain Fog
20. Cannot seem to focus

Thank you for letting me share some of my story. I know it seems all over the place, but that is just how life has been. I have been so frustrated, and nervous, about all this. My family has a history of Autoimmune, stomach cancers, and stomach ulcers. So I am a prime suspect for this stuff... just wish they could figure it out. I have to say I am very discouraged because of it all.. so much search and no answers....
 
Hi Pastorjim,

So sorry to hear of all the problems you have had. While my symptoms differ a bit I can totally relate to the long term affect this has on a person and how frustration it is to have a lack of answers.

I cannot offer any advice other than to look after yourself and keep going back to the GP if you need to. You know your own body and you know the symptoms are not normal.

I hope you get the help you need and find out what is going on. Just keep in mind that you are not alone and you can talk to people on here when you are struggling or frustrated.

Andy
 
Izzie said:
Dropping in to ask a quick question - does anyone know if it's possible to be allergic or intolerant to alcohol?

My stomach has been alright this week so I had one little drink this weekend and it didn't take two hours until I felt AWFUL. I get joint pains and a sort of flu-like pain in my body and just a general awful unsettled/anxious feeling. I've kind of always been like this when drinking but used to ignore it when I was younger. Now since I hardly ever drink at all my tolerance of it seems to have gone down even further.
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Yes, If you have intolerance to the ingredients. For example, if you are intolerant to wheat then you will not be to drink / eat things that contain it.
 
In preparation for my colonoscopy next week I have lifted my food restrictions. I'm sure a healthy person would think this is crazy, but, I felt so good off dairy and gluten that I was worried to colonoscopy would be negative. And I don't want that. I want answers. I am tired of people giving me a hard time about my food restrictions, tired of my husband balking at the dairy free, gluten free break and bake cookie dough (yeah, I found it, and it was only $4). I want to be able to say I have ____ ( whatever it is) in stead of, those foods seem to upset my stomach and no one knows why. I am tired of my family viewing this problem as some bloating and cramping, when really it is the PAIN that is a problem. The D almost every morning, constipated stool consistency by evening. And the low abd pain all. the. time.
 
OhioRyan I know exactly how you feel. My symptoms are very similar and my docs have kept saying its 'just IBS'. Even if that turns out to be the case, there is no such thing as 'just' IBS / IBD / Crohn's. Some medical professionals view of IBS is shocking yet they love to diagnose it then tell you to 'get on with it'.

I completely understand how you feel and how as much as your family try to be supportive, they don't really fully understand the pain and the emotional impact it has on your life.

I too am waiting for testing now. I've just defended to be sent to see a gastroenterologist at my GP surgery this morning, after spending the last week not being able to lie on my front or back due to pain and again seeing dark blood in my stool.

I hope you get some answers so you can get the treatment you need.

Andy
 
I agree with the overall sentiment here, waiting to have a doctor come back with the correct diagnoses can be very frustrating. I have also come to the conclusion that family will never understand unless they go thru these horrific issues themselves. Living in constant agony can be so wearing. Most often, we really have to advocate for ourselves to get the answers we need.
OhioRyan, I don't blame you for wanting your issues to show up on your tests, as you know they are there and just want to be able to treat whatever the problem(s) might be. I have often said I wish doctors had to go thru some of this wait and see (plus the pain) themselves, so they would know what we are dealing with. It isn't that I really wish the pain on anyone, just want them to understand.
Ironically, today I just found out that my dog most likely has colitis. :( With a dog, it was basically based on symptoms, blood tests, history and ruling other things out. Of course, no colonoscopy. But if they did a "most likely" diagnosis on people, they could get into a lot of trouble if wrong. Hang in there all, just advocate for yourself strongly because doctors aren't always good at listening/hearing everything, and we know our bodies best.
I've had bad D several times today, but not surprised as my dad just passed away last Friday (who also had colitis or crohn's), and stress can definitely affect these things. Over all, though, I'm okay considering everything. My dad was old (his nineties) and not in very good health, so probably in a much better place for him.
 
The only time they have ever been sure of anything with me was colon cancer, they couldn't argue with that. Ron.
 
Sandy - I'm so sorry to hear about your dad's passing. No matter the age of someone, it's never easy to say goodbye. And I'm also sorry to hear about your poor dog! I completely agree about wishing doctors would have to deal with this stuff themselves, because then they might be a little more compassionate and actually try to help us. I've had so many doctors not give me any advice (besides exercising or limiting stress), and then telling me to follow up in like three months. So three months of suffering without even really trying anything? No thanks! The doctor I'm going to now was actually sick herself several years ago, and she experienced the craziness of our medical system. That's actually the reason I decided to go to her. So far, she hasn't made me better, but she is nice and 100% believes me and has told me that what I have does NOT sound like IBS. So that's something.
 
Sandy - I'll let you know if she figures out what's wrong with me and can make me feel better. If so, I'll give you her number. ;)
 
I agree that it's hard for family and friends to understand. Even if they do try to be empathetic it usually falls flat. And food is such a social thing so if you have restrictions they make things awkward...

I got an appointment to get iron injections in a couple weeks. I'm a little worried about it though, there's apparently a fair risk of anaphylactic shock? And being allergic to things is one of my big phobias/anxiety triggers so that concerns me.

Has anyone else here had iron injections? The kind I'm getting is Ferinject, apparently. Idk it would help to hear some stories I think :)
 
Izzie, keep in mind the risk for anaphylaxis is present in all medications. If you are very worried ask to stay in the Dr office at least 20 mins after your injection. They legally should have epi on hand for emergencies.

And I work with 8 pediatricians and for the most part I am comfortable discussing my health with them. Being coworkers instead of the PT/physician relationship hell's make them more relatable and I do know that they have had struggles. They have had doctors treat them dismissively in an ER, they have chronic illness, they have problems so they are are empathetic and helpful and want me to be well (so I can come to work every day). I think being on the other side of healthcare 50 hours a week changes the way you relate to physicians. And luckily in my area and with my insurance I can transfer to a new GI if this one is dismissive after my colonoscopy.

In other news my abd pain is back (yay?) It comes and goes and isn't terrible, so I can tolerate it well. Hopefully if I can keep it up until Tuesday I will be able to get some answers quickly.
 
I get where you are coming from with the pain fluctuating. I was experiencing intense stomach pain for over a week recently but the last two days it has eased off. It's always lurking :shifty-t: around the corner though so I should enjoy it while it last :)

Andy
 
I find that family friends and casual acquaintances really deep down don't want to know about our illness . We live it 24/7 and unless they our partners they only get an abbreviated version of the facts. Even when they are our partners it is not a given that they would be supportive. When I was dxed with colon cancer my wife did not want to know anything about it. My family asked what was happening and I told them and friends the truth . It was advanced ,aggressive and into six lymph nodes and that my surgeon suggested to do the things I most wanted to do as he expected me to be gone in under three years. Well it is 18 years later and my wife is my ex wife and all the people who I had spoken to now say 'gee it can't have been anywhere near as bad as you claimed or you would be dead'. I have more or less cut myself off from friends and family as I really don't feel like having to defend the fact that I am still alive. Moreover they could not deny the cancer ,I spent a week in hospital getting rid of it. All of the other complaints that doctors just cannot diagnose are something else alltogeather. I can read it in peoples eyes . they just don't believe. I have one doctor who believes but he can offer no explanations. I feel so sorry for everyone here dealing with the frustration of not being able to get a simple concise answer to their medical problems. Hugs to all .Ron.
 
OhioRyan said:
Izzie, keep in mind the risk for anaphylaxis is present in all medications. If you are very worried ask to stay in the Dr office at least 20 mins after your injection. They legally should have epi on hand for emergencies.

And I work with 8 pediatricians and for the most part I am comfortable discussing my health with them. Being coworkers instead of the PT/physician relationship hell's make them more relatable and I do know that they have had struggles. They have had doctors treat them dismissively in an ER, they have chronic illness, they have problems so they are are empathetic and helpful and want me to be well (so I can come to work every day). I think being on the other side of healthcare 50 hours a week changes the way you relate to physicians. And luckily in my area and with my insurance I can transfer to a new GI if this one is dismissive after my colonoscopy.

In other news my abd pain is back (yay?) It comes and goes and isn't terrible, so I can tolerate it well. Hopefully if I can keep it up until Tuesday I will be able to get some answers quickly.
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That is true. I called and apparently it's protocol to stay for 30 minutes after your injections with a nurse to observe you. So, I think even if something were to happen, it's as safe an environment you can be in.
 
So, I had my colonoscopy. The Dr removed a polyp and tool several biopsies but apparently didn't see any apparent disease process. I'm not going to lie, I cried in the recovery bay. I am desperate for an answer.

Back to non dairy, gluten free living. Because I felt much better.

Now I am having quite alot of pain, in my normal pain places. Probably from the prep/procedure.
 
I really hope you find some answers. I know how frustrating it can be getting test results. On one side, you are pleased that the results are clear. On the other, you are so frustrated and mad because you don't know what is causing your symptoms.

Wait for the biopsy results to come back, these could indicate some issues that are not apparent to the naked eye.

I mentioned in another forum that I'm now referred to see a specialist in June so I imagine I will be prodded and poked in the hope of finding an answer. If my tests come back clear, I am going to request to be referred to a nutritionist / dietician to guide me through find what food triggers I may have.

I can only suggest that if all your tests come back clear from a physical perspective, ask for some professional support if they suggest it's food related.

Sending my support to you, I hope you recover well from the procedure.

Andy
 
It is so very frustrating not having answers, but there still might be some answers in the biopsies. There is a form of microscopic colitis, tho this form of colitis is only present in patches so usually samples have to be taken from several areas. Also, sometimes tho any form of IBD disease is present, it doesn't always show up well on tests (and I know from my husband's experience some doctors that are supposed to be good really aren't so good at seeing what is obvious.) Hang in there, keep advocating for yourself. Myself, I've had several other medical problems that unfortunately took a long time to diagnose, but persistence finally got my answers. Now, I find myself in similar circumstances to you with tummy troubles, but know that answers can be found, as frustrating as it is to get there. In the mean time, take care of yourself as best you can, and if need to, go seek medical attention again and again until you get the answers you need.
 
Answers I would like too! We all have that in common here seeking answers and hopefully help!
I am really feeling it today as in so exhausted I can hardly function. Several coffees down and I'm still feeling it. Trying to work with a head full of fuzziness.
I know I'm not well and I need answers...impatiently waiting for my appointment in a few weeks time which hopefully will start the process of getting answers and help.
Im sure others of you can relate to the feeling of looking in the mirror and seeing signs your not well. For me the whites of my eyes seem to be red a lot of the time and the black under my eyes could hardly get any darker! It's awful and every time I look I see reflected how I feel inside [emoji22]
 
I generally try to stay positive and even reassure myself that things will work out in the end, but just want to say that today I am very grouchy, tired of not having answers myself and very frustrated with medical "professionals" that think they are God's gifts to the earth, if not gods themselves. We do indeed know how we feel better than them, and I'm just plain ol' tired of not being well. I'm not expecting them to come hold my hand, just want to see them treat me and my loved ones (including all of you that I care about here) with respect and maybe a modicum of compassion.
Just my vent for the day.
 
SandyUte said:
I generally try to stay positive and even reassure myself that things will work out in the end, but just want to say that today I am very grouchy, tired of not having answers myself and very frustrated with medical "professionals" that think they are God's gifts to the earth, if not gods themselves. We do indeed know how we feel better than them, and I'm just plain ol' tired of not being well. I'm not expecting them to come hold my hand, just want to see them treat me and my loved ones (including all of you that I care about here) with respect and maybe a modicum of compassion.
Just my vent for the day.
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Agreed!

I've had a frustrating couple of days re: medical professionals as well. Needed to talk about my upcoming 24 hr pH monitoring and not being allowed to take meds for 10 days prior - which is completely impossible for me my symptoms are bad on meds. I don't want to make myself sick for weeks to come. Anyway. No one knows anything! And they keep referring to each other. "Call so and so, they'll know" - and they never do.

So basically no one knows what to do about my meds now before test day. So I'm just taking them as usual. Hopefully will be able to get a hold of a nurse at the actual testing dept. on Monday for some advice. :shifty-t:

Very fatigued, dizzy and weak from the anemia atm. High hopes for the Ferinject next week, hoping to regain some energy. Have had to call in sick for work a lot lately which makes me feel very guilty.
 
Starnett, I'm glad you've got an appointment through, I know it will feel ages away (been there) but actually that's really quick for the NHS. It was about 5 months between referral and my first appointment for me, it would have been just over six months but they put on an extra clinic on and I was one of the lucky ones! Honestly though, if you're feeling increasingly unwell keep going to the GP/walk in/A&E if you need to, they can try and get you seen quicker if they feel it's needed.

Izzie, I can't believe they still haven't given you an answer about the meds! I hope the iron injection helps.

I've had another appointment with the gastroenterologist, for those who are new my last appointment was awful and I left in tears, she didn't listen to me or give me chance to ask questions. Well, this time was almost the opposite. She had lots more time for me, seemed a lot more interested in my case and has booked me in for more bloods, a test for my pancreas, a breath test for SIBO and an urgent gastroscopy with duodenal biopsies. Also found that I do indeed have a fissure so that's now extra sore from the examination! I've also had a blood test to see if I carry the genes for coeliac but that will take around 6 weeks to come back, hence the gastroscopy. She also said she has spoken to some of her colleagues and the consensus is although my IgA is low it's not low enough to cause a false negative result on coeliac screen. So god knows what's going on right now!

I'm kind of hoping the gastroscopy and biopsies show something more than the mild, non specific inflammation my colonoscopy found. I just want answers.

Plus the last few weeks I've had so much nausea I've barely eaten and am living on antisickness tablets and fortijuce and the D has been pretty brutal. And new pain, the joys, so now not only do I have my lower right and lower left quadrant pain I have sharp pains under my ribs on both sides and a general ache in the centre of my chest a lot of the time. I hope it sticks around long enough for the gastroscopy to be honest.
 
It is always something. I have been having trouble breathing. A few years ago I was in hospital with a suspected heart attack that turned out to be a bad influenza. I was sent home with a dx of severe asthma. Two weeks ago my gp did spirometer tests and discounted the asthma and dxed it as copd. I saw my nephrologist last week . My kidney function is staying stable under cyclosporine.He asked what my problem was , he picks up on my mood pretty well. I told him about the copd dx and the intention to put me on Spiriva. He just asked AND? I said ir was crap. My mother and brother were severe asthmatics, my uncle died of copd and my dad had bronchitis. They all used to cough non stop. I don't cough....at all. I told him my oedems was really setting off my peripheral neuropathy. He checked. He was shocked . he said the oedema was up past my knees. He spent a long time listening to my lungs. He said there was fluid in them. He checked my heart. My pulse is erratic and he could hear a murmur from what he thinks is a leaky valve. He said I appear to have congestive heart failure. He said the congestion is stopping me absorbing oxygen . He said the congestion is interfering with my stomach and giving me nausea. I have been put on fluid restriction. Only a litre of fluid a day. The day temps here are still around 30c . A litre a day has made me feel really bad as I am now on diuretics twice a day. I am still having some days of D so I am feeling really dehydrated. My breathing at night has improved a lot . I have lost around two kilos in weight (probably fluid). I have echo cardiograms next week and tests for pulmonary hypertension. As well as a full spectrum of bloods including underactive thyroid. He reviewed all of my chronic conditions , there are around 18 of them now. I am feeling very temporary. Ron.
 
So sorry Ron. Keeping you in my thoughts. Please keep us updated <3

My issues seem so minimal in comparison, but I can relate to the weight issues. As usual I'm really struggling with eating. For the first time the possibility of being too underweight is becoming a reality. I've already been referred to the ER for the issue in the past weeks but I won't go as I'm broke and terrified of being tube fed :/

Having a gastric emptying study this week (I think gastroparesis is a definite possibility) and stool labs for calprotectin and pancreas enzymes. We'll see what happens.

Hope everyone is doing ok <3
 
Good luck Adadzio. I hope you get some answers.
And yes, Ron, keep us updated please! I have an appointment with my cardiologist next week also, but just for a follow-up, probably no testing. I really hope they can do something for you Ron, so you aren't so miserable.
Sarah, Izzie, and all here, especially in this thread, you are in my thoughts and prayers as well. Not having answers is the pits.
 
So sorry to have been away from this thread for so long. I've been reading, just not posting.

My thoughts are with all those struggling right now. Working to find answers becomes so consuming, I know, and being so ill makes everything so much more difficult itself.

I'm not sure how I'm doing myself. Some days I have "ok" nearly formed stools on the Vanco, other days I'm right back to watery D. So I just wait and see what's coming next. This week I start taking it every other day.

Right now, 2 of my 3 children are sick with colds, and one is also vomiting, so I'm also busy trying to not catch whatever they have. I have discovered that I must use hand creams to keep my hands from drying between hand washings! Oh, and, at least here in the 'States, I found that Gold Bond makes a hand sanitizer MOISTURIZER instead of an alcohol based thing. Really handy for when I'm out and about, just keep a small one in my bag. (I didn't used to be so weird about germs, but being sick means I don't want to catch ANYTHING "extra" if you know what I mean!)
 
I ended up having an infusion, not injections, but I did it today! It went well. Had to pause for a bit because it seemed like I might have a reaction to it, but I think I was just stressed. So, yeah! Hoping I'll feel better real soon.

When I got home though I cut my thumb something horrible in the kitchen when I was trying to cut cheese. Bled for an hour and it'll scar something fierce. OUCH! Hopefully fancy manchego cheese doesn't have any particularly icky bacteria haha :)

Made me realize I have no clue about first aid and I'm almost inspired to take a class.

In any case - I've had a pretty stressful day and I'm probably going to have to reschedule my pH test (which is supposed to be next week) Mostly because no one's had any answers regarding my medication so I've been unable to prepare properly, but also because I'm just really stressed and exhausted from a bunch of other life stuff. Just need a break, you know ?

I hope the rest of you are doing well!
 
If interested, there are some creams out there that really do help prevent scaring (particularly the ones with silver properties). I had some nasty second degree burns over the better part of two fingers, and you would hardly know it now. The key is to keep your wound clean (hydrogen peroxide is good for that), plus moist and covered until healed.
Glad the infusion went well.
 
Hello all!

I'm very much new to the support group and I've sort of done more reading and reflecting than I have posting and sending support. I just wanted to thank you all for sharing your stories, your concerns, and words of wisdom with the rest of us.

It's a weird, confusing and scary road on the way to diagnosis, and I can't begin to imagine how frustrating it is to have biopsies, scans and such like come back and not yield definitive answers. One thing remains constant; the sense of community and support resonating from these forums and support groups. It's a pretty cool monument of humanity and compassion to be able to witness.

I had my CT scans done earlier this week showing some inflammation in my terminal ileum. I start prep for my colonoscopy tomorrow, with the procedure going through on Thursday morning. I've never been so excited and nervous at the same time... especially not for something as seemingly invasive as this..

Regardless, we all march onward, to answers I hope, thank you for taking the time to read this and I hope this finds everyone well!!

Keep fighting, Keep piercing forward, Live and Love

The mind conquers all.

Keenan
 
I don't know if anyone else here has had iron infusions/injections but I noticed something very strange this evening and that is - my skin is grayish?!

I kind of look like I've rolled around on newspapers. I feel perfectly fine, it just looks really strange. I know iron can stain things and turn your BMs black but I didn't expect this :p I'll call my doctor about it, but I'm very very pale so I don't know?! Just curious if anyone else has experienced this or has a guess as to what it could be.
 
I wish I could answer that Izzie, I have no idea. I just looked up side effects of iron transfusions briefly and didn't see that at all. I would base it on how you feel. Stay well.
Keenan, those were kind words and you sound like you have a good, positive attitude in spite of what you are going thru physically. I hope you get the answers you need through your testing and everything is easily dealt with. I don't envy you the prep, but at least you can keep in mind that is the hard part. The scope itself is much easier. Good luck and keep us posted.
 
Whenever I'm having an extra bad day, I come here and catch up on the posts I haven't read yet, and it always make me feel better.....emotionally. Sometimes I just feel so alone in all of this, and it feels like no one in my life understands. But then I read your posts, and I remember that I'm not alone in my struggle.

I've had an especially difficult couple weeks, and sometimes I just get so frustrated and tired of constantly feeling sick. I don't think other people realize how constant it is. I feel bad ALL the time. I'm even usually sick in my dreams.....can't even get a break there! I know I'm an adult (I'm 25), but sometimes I just want someone to take care of me!!

Thank you everyone for continuing to share your stories! Although nothing makes me feel better physically, this forum does help with my mental/emotional issues relating to my illness!
 
akgirl said:
Whenever I'm having an extra bad day, I come here and catch up on the posts I haven't read yet, and it always make me feel better.....emotionally. Sometimes I just feel so alone in all of this, and it feels like no one in my life understands. But then I read your posts, and I remember that I'm not alone in my struggle.

I've had an especially difficult couple weeks, and sometimes I just get so frustrated and tired of constantly feeling sick. I don't think other people realize how constant it is. I feel bad ALL the time. I'm even usually sick in my dreams.....can't even get a break there! I know I'm an adult (I'm 25), but sometimes I just want someone to take care of me!!

Thank you everyone for continuing to share your stories! Although nothing makes me feel better physically, this forum does help with my mental/emotional issues relating to my illness!
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akgirl, I totally understand how you feel. I am so burnt out from being sick for a year and a half and honestly the worst part is not having any answers and trying to act like a normal 21 year old in the meantime. My entire life is affected but I try to push forward and ignore these symptoms because what is my excuse when I miss class or work or any social function?? "Sorry, I can't eat and my body is literally starving, no one knows why and no one can help me?" Somewhere along the line I stopped trying to get others to understand. But you're right—it's so comforting to come here and hear that others are experiencing the same thing :)

I had my stool tests earlier this week and gastric emptying study today. My stomach hadn't emptied after 90 minutes, so I had to come back at the four hour mark for some more scans. Not expecting much, but I go through the motions of the tests because I have nothing left to lose (no spare weight on me either!!)

Hugs to all!
 
Hi guys, hope you're all doing well.

I'm doing... okay-ish, I guess. Stomach is semi-stable, I've been doing good with diet stuff and it really does make a difference. Rice milk has been my savior, I think I actually can't tolerate dairy very well... Though it's difficult for me to accept that I have to make permanent lifestyle changes due to this illness. I keep expecting, on some level, for it to just go away so I can go back to normal.

Since the iron infusion I've been, well, grayish, which no one really seems to take seriously. They see it too, but assume I've just worn overdyed jeans or something. Not sure what it is.

I've had absolutely no appetite since the infusion, I try to eat and I just feel like I'm chewing for ages and more than once I've had to just spit food out because I feel like if I swallow I'll puke. I've also had a lot of random body pains. Everything feels kinda tender and sore and my legs cramped up really bad last night. I'm not sure if it's just stress from having gotten so anxious during it or what. I find I put off calling the doctor's when random stuff like this happens because I just don't want to have to deal with it. If I'm somewhat functional, I just want to be as far from hospitals as possible...
 
I don't blame you for wanting to be as far away from hospitals (and doctors) as possible, but please take care of yourself and at least call if you are having concerns. I understand iron transfusions can cause side effects, but which are worrisome and more serious I am not sure. Please take care and let us know how you are doing.
 
Cat-a-Tonic,
I sure hope that you are still enjoying your trip to Japan and that you are nowhere near the earthquakes that are happening there.
(Has anyone heard from the last few days? if so perhaps you could share with us that she is ok.)
 
Have any of you taken antifungal medications? I just got prescribed two (Nystatin and Fluconazole), because my doctor thinks I could have a yeast overgrowth. Taking new medications gives me anxiety, because I am always worried about the side effects, and it seems like I always get worse afterward instead of better!
 
Akgirl, I have only used a nystatin topical/oral rinse type thing, when my babies were little and had thrush in their mouths. It wasn't a big deal then - they got over the thrush pretty quickly, and no side effects that I recall.

Hiya to everyone else!
 
akgirl said:
Have any of you taken antifungal medications? I just got prescribed two (Nystatin and Fluconazole), because my doctor thinks I could have a yeast overgrowth. Taking new medications gives me anxiety, because I am always worried about the side effects, and it seems like I always get worse afterward instead of better!
Click to expand...

I have had to have repeated courses of fast acting anti fungal meds because of multitudes of other infections which require antibiotics which in tien causes yeast overgrowth (antibiotics kill the good bacteria). I'm right in the middle of a six-month course of antibiotics for other infections which just didn't want to clear up. However, I'm not familiar with the meds you mentioned specifically except what I just read online. I did note that the yeast problems I had subsided significantly when I started taking good probiotics. Are you taking any? If not, I would highly recommend it. Research which ones work and why before you invest. . .
Myself, I am sooooo tired today. I already had a couple sleep disorders, but add a dog with colitis that needs out a few times a night, and multiple trips to the bathroom myself I'm barely functioning. The bathroom issues in the daytime are wearing in themselves, but this has got to stop.
My gripe for the day.
Hugs to all of you dealing with tummy issues. It gets old so fast, then when it never really goes away, even on better days.... (grumble grumble gripe gripe)
 
Oh wow Sandy I feel for you and your disrupted sleep! Everything always feels ten times worse for me when I haven't slept.

My grayish skin has gone back to normal. So that's nice. My stomach is a mess - not so nice. Sometimes I think I can "cheat" and eat some normal food when I visit family and such but no, I really can't. Now I'm back home and back to my regular meals of unseasoned chicken, white rice and mashed up avocadoes :p I must be getting all kinds of nutritional deficiencies considering the ever shrinking list of foods I can tolerate.
 
Hi, i’m 33 and have been having some Diarrhea with huge cramps, hot flashes but it would go away after i went about 2 times to the toilet it’s been going on for almost 10 years.
2 years ago I vomited red blood and found some black blood in my stools the same day. I couldn’t see a doctor before 1 week (was in the desert) when I came back they did a exam with a cam in my stomach, everything was ok.
Last week I woke up in the middle of the night with the same cramps but evacuation just wouldn’t make the pain go away. Woke up the next morning with red blood so I went to the emergency. They prescribe me 40 MG of pantoprazole 2 times a day and 4000 MG of Tylenol . I’m now waiting for the camera test which should happen in the next 2 weeks.
I have cut all lactose (6 days now) and gluten (3 days now)
I basically eat chicken, bananas, rice soup, cooked patatoes and carrot.
It seem find when I eat but every night I wake up (or can’t sleep) with huge pain (under my belly) seem like my intestines as been blown up, gas stuck, burning sensation, i get hot flashes, I tremble but no fever, every day is worst then the day before. Last night I seriously thought I was dying
I spoke the hospital but the department is close on week-ends so they can’t tell me when ill have my exam.

Is this dangerous, should I go back to the emergencies or just wait till my exams ? (I live in Quebec so emergency room can take several hours before they can see me)
 
GenevieveC said:
Hi, i’m 33 and have been having some Diarrhea with huge cramps, hot flashes but it would go away after i went about 2 times to the toilet it’s been going on for almost 10 years.
2 years ago I vomited red blood and found some black blood in my stools the same day. I couldn’t see a doctor before 1 week (was in the desert) when I came back they did a exam with a cam in my stomach, everything was ok.
Last week I woke up in the middle of the night with the same cramps but evacuation just wouldn’t make the pain go away. Woke up the next morning with red blood so I went to the emergency. They prescribe me 40 MG of pantoprazole 2 times a day and 4000 MG of Tylenol . I’m now waiting for the camera test which should happen in the next 2 weeks.
I have cut all lactose (6 days now) and gluten (3 days now)
I basically eat chicken, bananas, rice soup, cooked patatoes and carrot.
It seem find when I eat but every night I wake up (or can’t sleep) with huge pain (under my belly) seem like my intestines as been blown up, gas stuck, burning sensation, i get hot flashes, I tremble but no fever, every day is worst then the day before. Last night I seriously thought I was dying
I spoke the hospital but the department is close on week-ends so they can’t tell me when ill have my exam.

Is this dangerous, should I go back to the emergencies or just wait till my exams ? (I live in Quebec so emergency room can take several hours before they can see me)
Click to expand...

It's impossible for anyone to determine the severity of your condition or how dangerous it is via the internet as none of us here are doctors. Call your doctor! And if you feel as though you are dying and your symptoms are getting worse each day then yes, go to the emergency room!

When you are sick you need care, even if it will mean hours of waiting in the emergency room!
 
Thanks for your responses. These new medications are giving me horrible side effects.....I've been in bed for days and haven't even showered. Ugh. I guess I should have expected it, because I always seem to get worse from medications that are supposed to make me better.

I just feel so hopeless sometimes, you know? I can't feel this way for the rest of my life. It's already taking all my strength to not completely break down. To make matters worse, my husband leaves in a few days for work, and he's going to be gone for two months. I'm not able to leave my house much, so he's basically the only human interaction I get. How do you guys cope with the depression and anxiety that comes along with being chronically ill?
 
I'm sorry to hear that akgirl!

I recognize that feeling of hopelessness. Especially when my symptoms are worse, some days I'm just unable to see any possible positive outcome. I try to remind myself that I will get answers, at some point.

I do relate to your feeling of isolation. I live alone, and during times when my illness is bad enough that I can't work or go to class, I'm pretty much by myself constantly. I find that I talk to family a lot on the phone those days, and that does help a little. I've also explained the situation to friends at times, and they've come to visit. Also just not focusing on the fact that I'm alone, tends to help? Sometimes I feel very anxious if I think "oh now I'll be alone for a whole week". If I just don't think about it and try to find enjoyable things to spend my time on, it usually doesn't feel so bad.
 
Izzie - Thank you, that does help. I think me focusing on being alone is giving me added anxiety. I've been sleeping/living in our guest room the past several days, because it's only a few steps away from the bathroom. So even when my husband has been home, I haven't seen him much. I just keep trying to remember that all my days won't be THIS bad, but I have to keep telling myself that, because I've been extra bad for a while now. And then I see other people living their normal, happy, carefree lives, and I get so jealous. Why can't my life be like that?! I know I shouldn't compare, but it's hard not to, especially when I've been having a really bad week.....well, month, really. Things have to get better eventually, right?!
 
After waiting since the beginning of January I am finally off to see the specialist today. I know I won't get answers today but finally we will progress the diagnosis and treatment I hope!
 
ShellK said:
After waiting since the beginning of January I am finally off to see the specialist today. I know I won't get answers today but finally we will progress the diagnosis and treatment I hope!
Click to expand...

ShellK I know the feeling, I've been waiting since about the beginning of January as well and I've just seen my specialist/had my colonoscopy last week. The waiting never helps anxiety but answers are coming and very soon!!

Big hugs to everyone!

Keenan
 
akgirl said:
Izzie - Thank you, that does help. I think me focusing on being alone is giving me added anxiety. I've been sleeping/living in our guest room the past several days, because it's only a few steps away from the bathroom. So even when my husband has been home, I haven't seen him much. I just keep trying to remember that all my days won't be THIS bad, but I have to keep telling myself that, because I've been extra bad for a while now. And then I see other people living their normal, happy, carefree lives, and I get so jealous. Why can't my life be like that?! I know I shouldn't compare, but it's hard not to, especially when I've been having a really bad week.....well, month, really. Things have to get better eventually, right?!
Click to expand...


I also try to flip it around and do things I couldn't do if I WASN'T alone. Wear comfortable but super ugly clothes, put on music I like that other people hate, eat my bland boring stomach-friendly foods without judgment etc.

And yeah, focusing on one day at a time - what am I doing today to feel okay - is a lot less stressful than "oh no I'll be alone for weeks now". The latter is overwhelming and seems inevitable and will definitely make me anxious.

And for me I also remember that I've had really really bad days/weeks/months before - both in terms of this illness and other things in life - and I've gotten through them and have had many good days since. It helps me really believe that the suckiness isn't permanent.
 

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