Undiagnosed Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Alright guys, help me make sense of this. Just spoke to a nurse about my test results. My hemoglobin level is normal. Used to be 95 is now 125 which means, if I understood her correctly, that I'm no longer anemic.

However I still have iron deficiency? Apparently that test was at 4,5 but is supposed to be over 9.

What effect does iron deficiency have if you're not anemic? Is it still "dangerous"?

And does PPIs affect iron uptake at all?

I don't really understand how my hemoglobin can have stabilized but I still have iron deficiency. Does that mean my anemia wasn't connected to iron after all?

I have a phone appointment with my GP tomorrow morning but I thought I'd pop by and ask for any of your personal experiences and thoughts on this so I can prepare some things to ask her.

Oh and I'm getting a new GI within a month! Talked to a nurse at the GI dept today, she was super nice. Am a little concerned since they're reading charts from my old (complete jerk) GI, but I'm hoping I can make them understand how we disagreed...

So things are moving forward :)
 
Izzie - glad things are going forward! I have no idea on iron vs hemoglobin anemia, sorry.

Megan - Ya know, I'm not sure which way my fissure goes, but I don't think it's lateral? Sorry, that's not very helpful. All I know is that mine is likely "just" a fissure at this point.

Kelleh - Ugh, that doesn't sound good at all, I hope you get relief soon, and sorry about the hidden whey!

I just scheduled an appointment with my GP (that I'm not super fond of) to talk about some of my symptoms, including waking up at night with sore hips lately, and my super dry eyes, and my GI stuff, etc etc, to see if I can talk her into ANA testing for autoimmune stuff like Sjogrens. I had emailed her earlier, and she basically said "dry eyes are common, and it's winter in CO. Autoimmune is rare. However, if you want to be tested for autoimmune, make an appt and I'll tell you those things in person". So I did!
 
Izzie, pale gums are definitely a sign of anemia! That was the first thing my GI said, when we were discussing the rectal bleeding when it first got really bad - he asked to see my gums. The dizziness sounds horrible as well. You really need to get that addressed, right away. For what it's worth, my hemoglobin was also normal but my iron was really low - our units of measurement seem to be different here, but my iron was at 30 and it needed to be at, bare minimum, 50 (my mom said it should be more like 75 minimum). And my ferritin was at 4 before which is also extremely low (it's at 180 now!). It is something that needs to be addressed, the human body needs iron for energy and for life and stuff. I'm not sure if you're at an imminent risk of dying if your iron stays low for a long time, but it certainly can't be good either. You need iron infusions particularly if you're that dizzy and your gums are that pale. My GP was the one who ordered the iron infusions for me, so talk with your GP - hopefully she can get the infusions ordered for you and you won't have to wait until your GI appointment.

Megan, I've had on-again off-again fissures as long as I can remember. I'm 36, and I've had them at least as far back as college and probably in high school as well (I can remember being in college, getting a fissure, and thinking, "oh no, not this again"). And I didn't develop this IBD until just before I turned 30, which means I have had fissures for 10+ years before my IBD manifested. I guess I can't say for certain, because maybe I've had latent IBD all my life and it only made itself known when I turned 30? But certainly, I've had fissures long before my first flare-up. I don't know if that's helpful at all, but that's my experience.

Wildmtn, sounds like you need a new GP, yours sounds rather rude and dismissive! Hopefully you can have your ANA tested anyway though (it's just a simple blood test so I don't see why your doctor would refuse you that). You might want to ask for an x-ray of your hips, as well. That's how my arthritis was found, although we still don't know for sure what type of arthritis it is. (Probably inflammatory, according to a rheumatologist I saw briefly.) If you do have arthritis in your hips, it's best to catch it early. Mine was caught early and has responded pretty well to physical therapy. The only time I have hip pain these days is if I skip doing my hip exercises for multiple days in a row, or if the weather is bitterly cold and/or snowing heavily (and even then, it doesn't always cause pain - we've had a pretty cold winter here and I have had hardly any hip pain).

How's everybody doing today? I'm so-so. Hubby made baked chicken for dinner last night, but he couldn't find his meat thermometer so he just presumed that the meat was fully cooked. I cut into my piece of chicken, took a bite, then we noticed that it didn't seem to be fully cooked. I was still chewing my bite so I spit it out, rinsed out my mouth, spit some more - I was still worried about having uncooked chicken germs in my mouth, though. I'm very much a worrier, and food making me (even more) ill is one of my top concerns. So I was worried all evening that I was going to get salmonella, and I made myself nauseous just worrying about it. Fortunately I seem to be okay today. Not the most fun evening though! And of course the stress of worrying has made my guts play up a little bit too, so I'm dealing with a bit of crampy d today. Hmph.
 
Hello!

Not sure if anyone in here remembers me. I've just dropped by to see how everyone's doing and how many people have finally gotten somewhere in terms of a diagnosis?

I'm well. Still on Humira. But not here to discuss myself! I always said I'd drop by even though I got my diagnosis and here I am! Albeit over a year later...

Lewis
 
Lewis!! Of course I remember you. Glad to hear you're doing so well - remission is wonderful! I'm still here, 6 years and counting with no solid diagnosis (although my GI has acknowledged that it pretty much has to be IBD and my GP has always thought it was IBD). I think I'm in remission as well, but I've been having nothing but trouble for the past year or so with hemorrhoids that bleed like crazy (to the point that I became anemic and needed iron infusions). So it hasn't been smooth sailing for me, but I'm okay IBD-wise and would be great if I could just get my body to stop producing bleeding hemmies.
 
Hello, I thought I would pop in here after silently following a little recently.

Tonight I'm finding being undiagnosed particularly frustrating and I know at least here people can understand that!

So, little introduction I guess. I'm Sarah, 24 and to be honest struggle to say how long I've had stomach problems. As long as I can remember I've had a delicate digestive system, especially as a student during exams. I never really thought much of it until May 2015, I developed the typical "is it IBS or is it Crohn's" scenario that seems to be the frustration that's common here. After a rough few months I had an especially bad couple of weeks and finally got the doctors to take me seriously. Between the addition of blood and the loss of 10lbs they finally listened. To cut a long story short it took me a month to get referred to gastroenterology, which happened at the end of September following normal bloods and fecal calprotectin. It took me ages to get an appointment, initially I wasn't going to have my first appointment until February 17th but a lovely GP got me an earlier appointment for January 12th after a particularly bad couple of weeks.

So my appointment resulted in more bloods, another FC and an urgent colonoscopy. The colonoscopy was done on the 18th and the report stated "mild congestion and granularity" within the terminal ileum and a "patch of granular inflammation" in the terminal ileum with the diagnosis from colonoscopy as "ileitis". My large intestine was "pristine" and there were biopsies taken from terminal ileum and a couple of points along my large intestine to be sure. I was told I would get a follow up appointment date for 4-6 weeks later but I'm still waiting for that so still in limbo.

I guess now I'm just finding it hard being in limbo with some answers, classic Crohn's symptoms but no answers or treatment yet. I was already underweight but I'm now very underweight and struggling to gain weight, I was given fortijuce to try and help so I haven't lost any more weight but I haven't gained either. I constantly feel weak and drained as a result which I hate, I just want to start feeling better.

I also have M.E/CFS, POTS and endometriosis so a bit of a train wreck really!

Sorry for the length, just frustrated that it feels like I'm going nowhere still and worried I will be fobbed off as just IBS when the mebeverine and fybogel I was given didn't help and made me feel worse.
 
Hi Sarahfh, welcome to the club. Reading through your story, I have good news and bad news for you. The good news - you'll likely be diagnosed soon. The bad news - it's likely Crohn's. Granulomas typically happen with Crohn's. I'm presuming they're looking at the biopsies to be certain that they're Crohn's granulomas, but once you get your appointment, I would imagine they'll probably diagnose you at that time. If you do get diagnosed, of course then you'll be given a treatment plan and should start feeling better and hopefully even get into remission.

Your other health issues, with this on top of it all, that just sounds horrible and I'm so sorry to hear that you've been dealing with so many illnesses at such a young age. Are your other conditions well-controlled? Unfortunately a lot of us deal with multiple health conditions at once. It seems that when you get one chronic illness, you're more likely to develop others as well. It seems so unfair but that's apparently just the way it is sometimes. I hope you can get all your health conditions managed so that you can enjoy life.

As for how to gain weight - have you tried high-calorie "healthy fat" foods such as avocado, olive oil, coconut, or nut butters (peanut butter, almond or cashew butter)? Even adding a teaspoon of olive oil to your meals can add a lot of calories (but in a healthier way than something like eating chips). Some people like cooking with coconut oil or adding a teaspoon of that to their meals as well, although some of us (me!) cannot digest coconut, so be a bit careful when you're experimenting with new foods as they may not agree with you.

You mentioned feeling weak and drained, and you also mentioned blood loss. Have you been checked for anemia? I was like a zombie when I had iron-deficiency anemia, I had no energy and would wake up from 8 hours of sleep feeling like I hadn't slept at all. Some days I'd stay home sick from work, sleep another 4+ hours, and still feel exhausted. There are other deficiencies that can make you feel drained as well - have them check your vitamin levels, specifically vitamin D3 and B12 as those are often low in Crohn's patients and can cause exhaustion or fatigue.
 
Hi all. Sorry to see so many of you still struggling—hugs!

Been a rough couple of weeks since my upper gi/colonoscopy. Still waiting for my follow-up, started bleeding again and struggling with food as usual. Generally trying not to think about my situation.

But today was…weird and eventful and got my mind running again. I've been feeling crummy and figured I just had a virus. While on the phone with my dad I mentioned how annoying the chest pain was. He said I should go get it checked out, to make sure it's not pneumonia or bronchitis. Being the person I am, I waved it off, but ended up finally going to a walk in clinic. All my GI issues came up in conversation, but I made it clear that this pain seemed entirely unrelated. The doctor said my lungs looked fine, but pushing on my chest caused sharp pain (me being me, I had thought that pain was "normal"…yeah, I dunno!). So she wanted me to see my GP for some x-rays. I waved that off as well, and she kind of sat me down and said: "You're 21 years old. You should be in the prime of your life. You are clearly sick for a year and a half now. If you were my daughter I would be concerned...you need to keep pushing your GP for referrals to other specialists—this kind of pain could absolutely be related to your other issues—it really seems autoimmune to me." That kind of woke me up. She made me call my GP in her office, schedule an appointment for the same day, and off I went (my GP wasn't in, just a Physician's Assistant, but she told me to go anyway in hopes that info would get passed on to my doctor.) So, I went in and explained my situation. The doctor quickly diagnosed me with chondritis (inflammation of cartilage), specifically costochondritis (between my rib and breastbone). She also did an x-ray to check for more "serious" conditions, it seemed fine, so I'm on my way with some steroids (MethylPrednisolone?). I asked if it could be related to my GI issues and she said "I don't think so," but apparently my GI noted in my file that he wants to do a CT scan. She offered to run it, but I decided to wait until I follow up with my GI.

So, not sure if I'm onto anything here, but at least glad to get some new meds to reduce pain. Definitely wasn't expecting to hear that my chest had inflammation today! My mind is just running with thoughts of my other joint pain, and if there could be any connection there...
 
Last edited:
Hi Cat, thank you for the welcome :)

I was confused by the "granular inflammation" to be honest, Google didn't help much either. So can granulomas be seen on colonoscopy or is grannular inflammation just to do with how the inflammation looks? Either way I suspected from symptoms that I was heading towards a Crohn's diagnosis then after my colonoscopy I've kind of started to accept it if that makes sense? I am still a little worried that because there wasn't ulcers or any of the definite Crohn's inflammation they might still fob me off but I just don't feel like it's IBS. No pun intended but gut instinct tells me Crohn's and it was right about my other conditions.

I've had the M.E/CFS since I was 13 so I have kind of forgotten what it's like to not be ill haha! But it can be hard work.

My last bloods also checked vitamin D and B12 but no results yet, I've had my iron checked on and off over the last year and it always comes back in normal ranges which is good. I think the weak feeling is purely down to malnutrition to be honest, my BMI is 15.3 so I am definitely underweight and I really am feeling it these days.

I live on peanut butter and cashew butter on toast lately, especially on the bad days. Bad days are peanut butter on toast, fortijuce and ready brek with almond milk haha! I've definitely found certain trigger foods, dairy, onion, spicy, greasy, fatty/fried foods all go badly and things like peppers go badly too, so does too much fruit and veg and pork too actually.

I think it's just limbo now of knowing something is wrong but having to wait to find out exactly what and wait for treatment options to get me feeling better. I've also found its hard in terms of work as I've had to have a fair bit of time off but so far I can't give them a named reason which I hate. I worry they think I'm faking it or putting it on or something :(
 
<P>Hey everyone!</P>
<P> </P>
<P>Been in lots of pain again lately. My stomach hurts BADLY when I wake up in the morning which is odd because nothing is in it. My left side is back to aching, and I my lower left quadrant is very sore if I push on it. Someone else mentioned it but I ALWAYS have sore hips a night. I can never ever get comfortable anymore. I'm wondering if I should look into that further?  I have hashi's though, so I wonder if it could be that.  My joint pain has been off the charts.</P>
<P> </P>
<P>Tomorrow is my SIBO test, so today ALL I'm allowed to eat is plain chicken with plain white rice and salt. I'm also allowed to have black coffee and tea. Grr. Going to be a LONG day. </P>
 
PaintedElephant - I think it was me that mentioned having hip pain at night recently. Interestingly I've been diagnosed with Hashimoto's in the past year, too. I know I have arthritis in my knees, but they haven't been in too much pain lately, but the hips have been an issue. - What a weird limited diet before the SIBO test! Hope it brings you answers!!

I'm still having lots of D, and struggling (but managing) to stay hydrated. I see my GP next Weds, and GI right after on Thursday of next week. I think my GP will at least run ANA blood work. If not, it looks like through my insurance I can "self refer" to a Rheumatologist if I want to try that route for a consultation. But I'd rather have the blood work done first - no sense paying to see another specialist if I don't have to. I did get the names of a couple of ones in my area, though. I carpool my youngest to school with a woman who has Lupus (who thinks my issues sound AI) and I have another friend who has just been found to have high ANA and is waiting for other results. Both of their Rhuems are close to me, so that's nice.
 
Wildmtnhoney said:
PaintedElephant - I think it was me that mentioned having hip pain at night recently. Interestingly I've been diagnosed with Hashimoto's in the past year, too. I know I have arthritis in my knees, but they haven't been in too much pain lately, but the hips have been an issue. - What a weird limited diet before the SIBO test! Hope it brings you answers!!<BR><BR>I'm still having lots of D, and struggling (but managing) to stay hydrated. I see my GP next Weds, and GI right after on Thursday of next week. I think my GP will at least run ANA blood work. If not, it looks like through my insurance I can "self refer" to a Rheumatologist if I want to try that route for a consultation. But I'd rather have the blood work done first - no sense paying to see another specialist if I don't have to. I did get the names of a couple of ones in my area, though. I carpool my youngest to school with a woman who has Lupus (who thinks my issues sound AI) and I have another friend who has just been found to have high ANA and is waiting for other results. Both of their Rhuems are close to me, so that's nice.
Click to expand...
<BR><BR>My hips have always been an issue too! Every single time I stand up, my hips pop and it's an awful sound. it's been this way for years! I saw a Rheumy a few years ago before my celiac diagnosis and was tested for Lyme's, Lupus and RA. All negative. Now I'm just baffled by this stupid joint pain and wonder if ANA blood work would be beneficial? I wonder if my Endocrinologist can run those? She's already said she doesn't' think it's my thyroid causing these issues, and it'd be easier than adding another doctor to the docket just to get blood work done. I guess I could always ask her.
 
Yay, the forum issues seem to be fixed! I can post without getting a blank screen or a weird error message.

PaintedElephant, I would bet your endocrinologist can run your ANA for you - my GP did mine (normal, of course - but that fits with IBD, as IBD does not affect ANA). ANA can point towards certain, but not all, autoimmune illnesses is my understanding. I know it can check for Lupus and RA, not sure what else. It's just a blood test though, nothing invasive, and it is a worthwhile test to have in my opinion.

Wildmtn, I hope you're able to find a good rheumatologist if you do go that route. I saw a rheumatologist a few years ago but he ended up being a terrible doctor so I dropped him and haven't gone down the rheumatology route since. He told me that my hips are fine but then he wrote in some note to my GP that I have inflammatory arthritis... WTF?? So I guess I have inflammatory arthritis but I don't know for sure.

Interestingly enough, I seem to be quite similar to you guys. My hips have confirmed arthritis, my knees have more recently started giving me some pain but haven't been diagnosed as arthritic yet (they have a lot of similarities to my hips though so I am presuming they do have some arthritis). Weird how a lot of us have hip and knee involvement!
 
PaintedElephant - You'll have to let me know how everything goes with your SIBO testing because I have plenty of experience with that. I was first diagnosed with SIBO from the breath test about a year and a half ago. My numbers were the worst my doctor had ever seen. I was on two antibiotics (I forgot the names) for two weeks along with the SCD diet. The antibiotics actually made me feel much worse. I retested for SIBO a couple weeks after finishing the antibiotics, and I still had it. My numbers had gone down somewhat, but they were still bad. So I did another round of antibiotics and then retested again. This whole time I was on the SCD diet.....so about two months. And I didn't even cheat once! Anyway, my third SIBO test showed that my numbers had gone back up! Ugh. My doctor said she'd never seen this happen, and she didn't know what to do, so basically that was that. Here I am, a year and a half later, still sick and have no idea if it's SIBO or something else.

The good news for you (if your test is positive) is, I think the SIBO treatment does work for many people. Keep me posted!
 
akgirl, I don't know if this is true with SIBO or not, but I've read that with certain diets or treatments, when the "bad" bacteria start to die off, most people do end up feeling worse for awhile. Not exactly sure why that is, but maybe that's why you felt so awful on the SIBO antibiotics? Just my guess. I know I feel worse when I do certain things that affect gut bacteria - like if I take a lot of probiotics, that really messes up my guts and my stomach. It's weird how something that is supposedly helpful ends up making a lot of us feel much worse.
 
akgirl said:
PaintedElephant - You'll have to let me know how everything goes with your SIBO testing because I have plenty of experience with that. I was first diagnosed with SIBO from the breath test about a year and a half ago. My numbers were the worst my doctor had ever seen. I was on two antibiotics (I forgot the names) for two weeks along with the SCD diet. The antibiotics actually made me feel much worse. I retested for SIBO a couple weeks after finishing the antibiotics, and I still had it. My numbers had gone down somewhat, but they were still bad. So I did another round of antibiotics and then retested again. This whole time I was on the SCD diet.....so about two months. And I didn't even cheat once! Anyway, my third SIBO test showed that my numbers had gone back up! Ugh. My doctor said she'd never seen this happen, and she didn't know what to do, so basically that was that. Here I am, a year and a half later, still sick and have no idea if it's SIBO or something else.

The good news for you (if your test is positive) is, I think the SIBO treatment does work for many people. Keep me posted!
Click to expand...

Oh my! You poor thing! Cat is right. I have read about the die off and it can be pretty intense.

So I had the SIBO test this morning. Mine was two hours. I'm not what the little machine is measuring but I could see a number on the screen. The first blow and second blow were low. Like 4 or 5. The third blow (at 60 minutes) went up to over 30 that I saw before she took it away from me. The others were higher but not as high as the 60 minute one (as far as I could tell. Like I said, I don't know how much longer the number keeps changing after you blow into it). During the test I didn't feel too bad. Did get some bloating/pain at the 60-80 min mark. Now I'm at work and it's been hours and I'm miserable. My guys are ROLLING. I can literally hear them bubbling and gurgling just sitting here at my desk. Very gassy and uncomfortable. The bloating is there and so is the nausea.

I asked how long it would take for me to get the results, and they said likely by the end of the day, or Monday. However, Monday is a holiday so I hope that it's today.

It's scary though. I know that I'm going to have to make a major overhaul to my diet and that's always scary. I've done a whole100 and a whole60, so I know I CAN do it, but it's VERY hard socially. Guess we'll see what happens today!
 
Cat - That's a really good point. It would have been nice if my doctor would have warned me! By the way, I love reading your posts. You're always so helpful, and just so real. I can relate to SO much of what you say!

PaintedElephant - Hopefully you can get your results soon! The lady administering my tests actually showed me my numbers before I left, so that was nice. I'm sorry the test made you feel bad though! And yes.....the diet. Ugh. It sucks that we have to feel so bad physically and then we can't even eat what we want! But if it would actually work, I think all of us would be willing to eat just about anything.
 
I've tried responding here for DAYS but something seems to be wrong with the tech. Here's hoping it works this time.

So, my bloodwork was better and my iron not so great. But my doctor doesn't want to do injections or infusions because it's risky. She'd ideally like for me to take iron pills for a few more weeks but I just can't. Having more tests in 4-6 weeks.

Have appointments with a GI and a gynecologist in early March. Reflux is still kinda bad. Have icky reflux pain. But I'm okay-ish. Managing everyday life somewhat.
 
PaintedElephant—Good luck with getting your SIBO results. Hope something comes of all that yuckiness.

I'm still struggling a lot with pain and fatigue. Thursday night the physician on call (the one who has been working with me this week on getting some new tests done) advised me to go to the ER, but I've been pushing through with the Prednisolone. Surprisingly it helps a lot with my GI issues…even though they found no inflammation in GI tract…so, not sure what's up with that.
I just remembered Monday is a holiday here in the States—the office told me yesterday I should be able to come in for autoimmune tests (she suspects RA) on Monday, but I'm not sure with the holiday and all. My whole body is in pain…I've never experienced this before, at least not to this degree…it hit me like a truck last week! Thankfully, the Prednisolone helps with the costochondritis, so at least the inflammation in my chest feels a little better. I don't know if the rest of the pain is also condritis (cartilage) or muscle or joints or what—it feels more muscular, and radiates out from my elbows and knees and hips. For months I keep getting these horribly painful bruises behind my knees and I have no idea where they come from, but they're always in the same spots. My GI saw them during my scopes the other week, but I think he brushed it off as nutrient deficiency. I couldn't get a follow-up until March 9th with my GI, so looks like I'll be hanging around my GP office until then, trying to get some relief for the pain…or at least get recommendations for a rheumatologist.
 
Another with the hip pain here! I actually saw the GP about my joint pain not long before my digestive stuff picked up, had blood tests for ANA and rheumatoid factor etc because my mum has lupus, which of course all came back normal. Then when my digestive stuff really picked up and I lost weight I started to get more hip pain at night so bought a mattress topper as I thought it was from the pressure and lack of body fat.

Well, I spoke to the hospital and I'm on the waiting list for my follow up appointment, but they said something about on the list to look after the 25th of February, so I'm pretty sure I will be waiting a while for my follow up! They said 4-6 weeks after my colonoscopy but the 25th is like 6 weeks and that's when they are going to start looking for an appointment for me. From referral to initial appointment was 3 and a half months so I'm guessing it's going to be May/June...

The longer I wait the more I worry that I'm going to be fobbed off with "just IBS" because so far all my blood tests and stool tests have come back normal, it's only been my colonoscopy that showed anything. Is that weird, or do other people have that worry too?
 
sarah, sorry you have to deal with such long wait times. I can't imagine the frustration (quicker access is one of the few redeeming things about private health care in the US, in my opinion…now if only the cost wasn't so exorbitant...)
I was essentially fobbed off with IBS a few weeks ago. I still have my follow-up but not feeling optimistic about it. The only test that showed anything significant (GI-wise) has been barium x-ray with small bowel follow-through. Every other test has come up "normal" and so those unusual findings were brushed aside. Funny, a few weeks prior to my scopes my GI was saying, "I'm going to give you this IBS meds, it might not help because IBS doesn't cause weight loss/loss of appetite as you have, but let's just try it" and after my scopes came up normal (just some benign polyps) he was telling me, "your weight loss is intentional, you've come to associate food with pain" (which is NOT true! my main symptom is fullness and getting full very quickly, not necessarily large amounts of pain from food itself) but he just scolded me, saying I need to force myself to eat more and regularly. So, your worry is definitely not unfounded, given a whole forum of us struggling to be heard and properly diagnosed.

I should note—at this point I really don't know if I have IBD—it's feeling more and more a "bigger picture" kind of illness, so I'm going to push more down that route. The most important thing for all of us is to take our pain and illness seriously. Don't let doctors or nurses or family or your own mind scold you or invalidate your symptoms. You know your body; they don't.
 
Okay so the day started off alright but after dinner with my family (burgers, fries, tiramisu - not the best reflux foods) I feel like shit. Feels like shards of glass grinding around in my stomach. Blegh.

I really don't know how to say no to people when they offer me food. Food and alcohol is how my family spends time together. Not in excess or anything, it's just how we socialize, and while I've abstained completely from alcohol for a pretty long time now, the food part is so hard. It's like if I say no to food I'm saying no to my family's love and care for me.

Same with friends. "Lets go out to eat". What am I supposed to say "no, go without me because there's nothing I can eat at that new Indian place"? And going out, it just feels really awkward and not fun at all to sit around in a bar with people who're getting increasingly tipsy while I'm there with my glass of tap water because I can't even have a soda without burping like a gross freak for hours and staying up all night with pain.

And even with myself, I've used food to celebrate things and as a comfort thing in the past. It's the weekend so I can have bacon for breakfast, or have some wine, or eat candy while watching a movie. And I don't really know how to get out of the habit, though it's easier when I'm by myself than when it's a social situation.
 
Adadzio - ime, dr's offices don't typically close for "bank" holidays like President's day, so I would call tomorrow and see if they're open, they probably are.

Sarah - sorry for the long waits! I know the worry about IBS all too well. The only reason I'm being treated differently by my current GI is because of the diverticulum, and then white blood cells in the stool. Otherwise, it's all IBS.

Izzie - Oh, I hear you!! Dh buys donuts every Sunday. Every Sunday!! It's a family tradition. And, although I'll pay for it later, I just ate a bear claw donut with apples, because he knows I love them, so he got one for me. Sigh. I have gotten a wee bit better at eating super sloooowwwly at restaurants, and just drinking water and enjoying the company. Most of the people I'm out with don't notice, and I still get to have a good time. But that has taken a few years of practice, and I still mess up sometimes and pay heavily for it. I've taken to buying myself knitting supplies and nice makeup as "comfort" items. Those give me something to do when I'm feeling down. I can knit or watch youtube tutorials on new looks and try them on or just play with eye makeup at home that I may never wear out but it's still fun for me, and gives me something to focus on for a bit of time.

So! An interesting development in my own guts! My belly doesn't hurt so much now that I've finished the course of antibiotics!! I cannot tell you how exciting it is to NOT wake in the middle of the night with belly pain (well, I bet you all can imagine!). When I wake now, it's just because my eyes are weird, so I just put in my eye drops and go back to sleep, or it's because my joints are cranky. But it isn't because I have to get up and spew vile D into the toilet, and that is just wonderful! I'm still having mushy stools during the day, but that's par for the course for me. I think I really may have had some diverticulitis or something similar going on.

But, my joints!! OMG! Dh is worried to the point of asking me to not drive the manual shift car, because he can see that it bothers me. When I first wake up in the morning, I'm so stiff and sore that I have to brace against the walls and sort of hobble to the bathroom for my first run of the day. That gets better the longer I'm up, but I'm using both hands to go up and down our stairs, so I can't really carry anything. I have one hand on the handrail, the other on the wall, and I'm using a lot of arm strength to balance and "lift" as I go up and down because I'm not trusting my legs. I see my GP on Wednesday, and I've asked dh to come with me, as support, to backup my claims, and help me remember things.

Then Thursday I see my GI. I hope I continue to feel better in the belly. It would be nice to have some good news!
 
Have any of you ever experienced a doctor or nurse who just has no clue?

I called the GI department just now because my reflux is so freaking bad I literally cannot stand it. I asked a nurse if there was anything else I could do leading up to my appointment that could help because it's just awful right now and I can't freaking go to work.

Her answer was that other than Omeprazole, there's nothing. I hadn't mentioned yet that I already take Gaviscon as needed, so I tested her a little by asking of there's anything available over-the-counter that I could take at the same time? "No, there's nothing."

She didn't even give me any basic dietary advice. She was very empathetic, and said she'd try to get my appointment moved up, but I mean... What kind of response is that to a patient who is just suffering. "There's absolutely nothing I can help you with".

Like, at least ask if the person just got done drinking a gallon of coffee or something and advice them to maybe not do that? At least tell them they can take some antacids before they burn a hole through their esophagus, you know? There's just no standard of care and it drives me up the wall to be honest.

I'm really amped up already about this appointment and I swear if ANYONE mentions me being "stressed" or "it's just anxiety" again I will flip my shit and go straight to private practice.
 
Izzie, there are certainly more over the counter remedies (at least here there are) than just omeprazole! You might want to try esomeprazole (Nexium) if it's available OTC there - it just became available over the counter here so I'm not sure of its availability OTC in other countries, but it's worth a try. It works better for me than omeprazole. Ranitidine should be available OTC as well and can be used in conjunction with omeprazole or esomeprazole. I take 600 mg (2x 300 mg tablets) daily of ranitidine so it shouldn't be detrimental for you to take it for the time being.

Other than that - I can tell you general tips that have helped my reflux. I'm presuming you already know a lot of this but here's what works for me. Don't wear clothes that are tight around your waist or midsection. Try not to do any exercises or activities that involve bending over forwards or tightening your abdominal muscles. Obviously avoid your trigger foods - keep things bland and low-acid, drink only water (no soda, coffee, alcohol, nor tea). Eat regularly to give your stomach acid something to work on, but do not over-eat or that will send things back up your esophagus. If you can, sleep propped up (if you can elevate the head of your bed, that's best).
 
Hi all, I'm in desperate need of help right now. I've called my doctors twice in the last 5 days, but none of them seem to be that interested in what I have to say.

I am trying for intolerances, so, elimination diet, but now I have been told to cut one thing out at a time, rather than all at the time, and should not be doing the low-FODMAP diet. So, going to be doing gluten free for a month.

What caused me to phone the doctors today was the fact I'm still frequently going to the toilet, still all pebble like, but I'm having the occasional (over the last 2 days) REALLY large stool. One was so large yesterday, it ripped open the fissure I had at the 3 o clock position. There was blood. EVERYWHERE. It's sore. Uncomfortable. Today, it happened again. But ripped open one on the 9 o clock side. No blood this time, but I did bleed all day yesterday. The one at 3 o clock feels like it's a lump and it's pretty damn deep (I was putting steroid cream on it, reason why I was touching it!) Doctor says I need to heal these, and now has put my Laxido dose up to 3 sachets, and if after 5 days it doesn't help, take 4 a day, as it wasn't helping. 2 used to give me D.

Since last night I've been having a throbbing and very uncomfortable pain left from my navel, it's so painful. The doctor wasn't concerned. It's probably due to the rubbish food I've eaten this weekend, but my stomach is so vocal and painful!

I hope everybody is ok! Sorry to go missing, then come back and vent so much!

EDIT: I've read that fissures that are at any point other than 12 or 6 o clock, can indicate something is wrong, but when the doctor had a look the first time this one came around about a month ago, she didn't even say about it, just said I had a fissure and haemorrhoids.
 
Kelleh, I haven't heard that, about fissures at other positions besides 12 and 6 needing extra attention. I learn something new every day! I agree that it sounds like you do need to be seen right away, so keep calling your doctors or go to the emergency room if you can. That amount of blood and pain needs to be looked into. I've had fissures in the past but mine never bleed much (unlike my hemmies). That amount of bleeding, I would think a doctor needs to at least look at it. I'm sorry I'm not able to be of more help! But I think your instincts are right that things need to be looked at by a competent doctor right away.
 
Cat-a-Tonic said:
Kelleh, I haven't heard that, about fissures at other positions besides 12 and 6 needing extra attention. I agree that it sounds like you do need to be seen right away, so keep calling your doctors or go to the emergency room if you can. That amount of blood and pain needs to be looked into. I've had fissures in the past but mine never bleed much (unlike my hemmies). That amount of bleeding, I would think a doctor needs to at least look at it. I'm sorry I'm not able to be of more help! But I think your instincts are right that things need to be looked at by a competent doctor right away.
Click to expand...

I hadn't, but I did a search on how to heal them and I came across it. If you actually do Google about the positioning, you get a lot of information about it. I keep calling them, but they're really not that interested, and I can't see A&E being any better in all honesty. :( The pain is so weird, and I just had a weird pressure in the lower part of my stomach, and it made me feel as if I needed to go to the toilet. Keeps having, and it sort of hurts my whole abdomen in the process. Never had that before. So odd. Ah well, I'm just hoping it'll clear itself up eventually. I feel so tired at the moment, and adding this on the top, is pretty annoying. :(
 
Kelleh, if anything with the pain changes or worsens, please do go to A&E. Especially if you get symptoms like vomiting or not being able to pass any stool at all - that could indicate an obstruction, which may not clear up on its own and could potentially be life-threatening (could lead to a perforation). I hope it does clear up soon! As for your doctor not being interested in your pain - that's awful. :( Can you see a different doctor?
 
Cat-a-Tonic said:
Kelleh, if anything with the pain changes or worsens, please do go to A&E. Especially if you get symptoms like vomiting or not being able to pass any stool at all - that could indicate an obstruction, which may not clear up on its own and could potentially be life-threatening (could lead to a perforation). I hope it does clear up soon! As for your doctor not being interested in your pain - that's awful. :( Can you see a different doctor?
Click to expand...

I told her that my stool was thin on the Laxido before. Then it turned back to lumps. Now some of it is just so huge, it hurts when it comes out because of the fissures. :( I will go to A&E if that is the case. I think I am going to get an early night tonight as I feel very tired. I believe I probably have eaten something I shouldn't have and that's why I feel this way. Stomach just feels awful right now. I am definitely going to the toilet.

She just seemed to ignore the fact I was in pain, and just concentrated on the fissures, which is OK, but she just keeps chucking Laxido at me! Hopefully 3 will help, but it's just annoying that I have to use that many, potentially 4!! Have to remember to take a sachet with me to work tomorrow. I've spoken to 2 doctors, and both are pretty much the same. I think if you tell them a bunch of symptoms, they go to the easiest to explain.
 
I have been treated for auto-immune psoriatic arthritis for years. I have given up on my rheumatologist , he is just a snake oil salesman. Honestly if I had the govt guideline list and a prescription pad I could do the same thing. I started on sulfasalazine. With gastro intestinal problems sulfa is a disaster. Next line methotrexate. harsh on stomach , next line Methotrexate injections. You probably get the drift. Try , fail ramp up to the next line. Do I really need to pay $ 120 a visit for that. One of my latter endoscopies showed what the doctor thought was stomach cancer. He was 99% sure but he was careful and took biopsies. He was surprised that it was wall to wall ulceration. I have been taking 40mg daily of Somac (pantaprazole)for ten years. I find that pain is really bad for wellbeing. That may seem a stupid statement but One of my problems is uncontrolled yo-yo blood pressure. My gp has no clue to what is causing it. My Nephrologist has reluctantly allowed me to use a low dose nsaid. One because of constant pain , two because he knows I am taking somac and three because if I have pain at night I have trouble sleeping and that starts a whole new raft of problems. I had to go off the nsaid for a couple of weeks but since I started again my b/p dropped from 160/118 to 120/75. It really is a tightrope e wlk. So easy to fall and so hard to get back up. Ron.
 
Cat-a-Tonic said:
Izzie, there are certainly more over the counter remedies (at least here there are) than just omeprazole! You might want to try esomeprazole (Nexium) if it's available OTC there - it just became available over the counter here so I'm not sure of its availability OTC in other countries, but it's worth a try. It works better for me than omeprazole. Ranitidine should be available OTC as well and can be used in conjunction with omeprazole or esomeprazole. I take 600 mg (2x 300 mg tablets) daily of ranitidine so it shouldn't be detrimental for you to take it for the time being.

Other than that - I can tell you general tips that have helped my reflux. I'm presuming you already know a lot of this but here's what works for me. Don't wear clothes that are tight around your waist or midsection. Try not to do any exercises or activities that involve bending over forwards or tightening your abdominal muscles. Obviously avoid your trigger foods - keep things bland and low-acid, drink only water (no soda, coffee, alcohol, nor tea). Eat regularly to give your stomach acid something to work on, but do not over-eat or that will send things back up your esophagus. If you can, sleep propped up (if you can elevate the head of your bed, that's best).
Click to expand...

I did purchase some Ranitidine today even though my GI says I shouldn't mix. I haven't taken it but I feel better knowing I just have something on hand if I need it. I tried a different OTC antacid this afternoon and it seems to have made a slight difference, but I'm having a real shitty reflux week. I'm distracted and irritated at work which is not good when you have a very social job. I might actually have to call in sick tomorrow. FOR REFLUX, which feels stupid, but honestly most of the day today I just wanted to cry and go to sleep so I wouldn't have to be in pain all the time.

I actually tried off-brand esomeprazole last year, but it didn't agree with me. Was belching constantly on it. But I've found that for me, brands matter. There's only one brand of Omeprazole that actually keeps me somewhat functional. The others are pretty useless. So if I actually get to the GI I might ask to try proper Nexium. Because that's not available OTC for some reason.

I'm really worried about my appointment for some reason. I had several scopes that showed no damage when I was REALLY ill and I'm worried that they won't find anything this time either and I don't know what that means. I mean I've heard of non-erosive reflux, but I don't know. I KNOW this is not all in my head, I absolutely 100% know that, not a single shred of doubt, but if the answer isn't clear, doctors act like you're just making it up then, and I don't want to have to deal with that again.

My mom tells me to stop taking things out in advance and getting worked up over nothing. And I know she's right, but somehow it's easier to be disappointed beforehand so you don't have to be so crushed if it does go badly :shifty:

@kellehbeans: So sorry you're having a rough time. I was on Laxido a bunch about a year ago. Sometimes it helped, sometimes it didn't, but I did find if I used it too much it just made everything into a godawful mess. Then again I also have reflux, so it's probably a different situation. I hope you feel better soon :hug:
 
So I'm going in for a whole bunch of bloodwork with the wonderful PA who's been checking up on me almost nightly. She ordered all of these…

ANA, DIRECT, REFLEX TO 9 ENAS
C-REACTIVE PROTEIN
CBC WITH DIFFERENTIAL WITH PLATELET
CYCLIC CITRULLINATE PEP. IGG
FERRITIN
IRON AND TIBC
LYME DISEASE ABA CONFIRMATION
RHEUMATOID ARTHRITIS FACTOR
SED RATE, WESTERGREN
TSH W REFLEX TO FREE T4
VITAMIN B12
VITAMIN D, 25-HYDROXY

I'm kind of nervous, though I don't really know why….I guess worried both if they DO find something and if they don't...Wish me luck :shifty-t:
 
ron50 said:
I have been treated for auto-immune psoriatic arthritis for years. I have given up on my rheumatologist , he is just a snake oil salesman. Honestly if I had the govt guideline list and a prescription pad I could do the same thing. I started on sulfasalazine. With gastro intestinal problems sulfa is a disaster. Next line methotrexate. harsh on stomach , next line Methotrexate injections. You probably get the drift. Try , fail ramp up to the next line. Do I really need to pay $ 120 a visit for that. One of my latter endoscopies showed what the doctor thought was stomach cancer. He was 99% sure but he was careful and took biopsies. He was surprised that it was wall to wall ulceration. I have been taking 40mg daily of Somac (pantaprazole)for ten years. I find that pain is really bad for wellbeing. That may seem a stupid statement but One of my problems is uncontrolled yo-yo blood pressure. My gp has no clue to what is causing it. My Nephrologist has reluctantly allowed me to use a low dose nsaid. One because of constant pain , two because he knows I am taking somac and three because if I have pain at night I have trouble sleeping and that starts a whole new raft of problems. I had to go off the nsaid for a couple of weeks but since I started again my b/p dropped from 160/118 to 120/75. It really is a tightrope e wlk. So easy to fall and so hard to get back up. Ron.
Click to expand...


That is a shame that sulfasalazine didn't help with your gut. It is used for both IBD and arthritis although mesalamine (pentasa, Delzicol, Canasa, Rowasa, Lialda, Apriso, Salofalkentasa) is probably better for IBD. Methotrexate is a horrible drug!!
 
Hi Lorikeetie,
It was prescribed primarily as the first line treatment for auto-immne arthritis, psoriatic arthritis, but within two weeks I had non stop diarrheah and my rheumy got a call from my nephrologist that we try something different. My brother on the other hand has had ulcerative colitis for over 40 years and it has been sulfasalazine that has given him an almost normal lifestyle with a little help from prednisone and prednisone suppositories. Methotrexate was an effective drug for me , it helped after quite a while with the pain and it was bringing my nephrotic syndrome under control. Its downside was that it ramped up the pain from my auto-immune neuropathy with some dreadful flares making life miserable both on oral and injections. I went up to the next step, arava, but it had dreadful side effects on my liver . Now I just take cyclosporine. It has helped my kidneys and seems to moderate the pain from the arthritis. I have given up on pain killers and neuropathy meds. The last pain killer was targin ,oxycodone//naloxone, I was on 80 mg daily for two years then it started to cause more pain than it stopped. I am on a taper to get off it. 32 unpleasant weeks , I am over half way but I am having trouble balancing bile salt malabsorption ( gall bladder surgery)against opiate induced constipation. It is causing me a lot of grief. I had stage 3c colon cancer into six nodes over 18 years ago. Life since then has not been much fun, there is always something trying to either kill me or make me wish I was dead. My nephrologist who really is a nice bloke said to me last week you know this is probably as good as it is going to get, Thanks Mate!. Ron.
 
That is pretty rough Ron! I find sulfasalazine OK for my gut but not enough for my joints also on methotrexate and cyclosporine. I have AS or IBD-related spondyloarthropathy. Tramadol as a first line pain killer and morphine for break through. Anaemic, raised inflammatory markers, diarrhoea, right lower abdominal pain.... Just saw my GI and he is going to do colonoscopy and pillcam again to see if he can find Crohns to give be Humira.
 
Izzie, can you perhaps buy name-brand Nexium online? Here in the US it's available OTC (yes, the name-brand actual Nexium, not just generic) and it looks like it's available on amazon as well. Just a thought for you if you can only do name-brand meds like that.

As for your appointment, I think you should ask for the pH impedance test. I've talked about it in the past, it's where they put an NG tube in you for 24 hours and measure how many episodes of reflux you have, how acidic is your reflux, how many times does the reflux reach the top of your throat, etc. My upper endoscopies always look mostly fine aside from the small hiatal hernia, but my pH impedance test showed the true impact of how bad my reflux is (I think I've said this before, but I had something like 48 separate episodes of reflux, half of them reached the top of my throat, my longest single episode was over 5 hours long - that's some serious refluxing!). I definitely encourage you to put your foot down and demand that test - it really was eye-opening for me and my doctors as far as how bad my GERD really is.

Adadzio, those all sound like worthwhile blood tests to have. CRP (C-reactive protein) and ESR (elevated SED rate) are both inflammatory markers, so if you're inflamed they should* pick up on that (in about 10% of the IBD population, CRP and ESR will stubbornly be normal even in a terrible flare, so they're not an exact measurement but a decent general tool for most people). ANA can check for some autoimmune illnesses (not IBD though - I know it can check for Lupus and I believe RA as well). And those vitamin levels - iron, ferritin, B12 and D - are all good ones to look at, as those do tend to be low with IBD. Good luck and keep us posted on the results! I hope something comes back with a worthwhile result.

How's everybody doing today? I'm bleh. I had recently stopped taking the steroid suppositories finally, thought I might be doing better. Nope, not so much. Last night I had a bad episode of d followed by rectal pain and pressure - it sure felt like a new hemmie was forming. So, after 2 whole days of being off the steroid suppositories, I'm right back on them again. Ugh. At least they're helping, but I know I can't stay on steroids forever and I can't seem to not have constant hemorrhoids without them. The good news is that I see the colorectal surgeon next week, so hopefully she can do something for me. I'm not overly optimistic though. My GI is clearly out of ideas so I'm not sure what options this surgeon will be able to give me, and I don't really want to have rectal surgery as I know that fecal leakage/incontinence is a really common side effect. How cool would that be, at age 36, to start shitting myself on a regular basis. I'd rather stay on the steroids indefinitely than have to deal with that! Hah, maybe the surgeon can give me a temporary stoma to let my rectum heal for awhile. I honestly wouldn't be 100% against that actually but I'm guessing my insurance would never in a thousand years cover stoma surgery because of hemorrhoids. :p
 
SIBO test came back positive. They said my insurance will not cover Xifaxin, so they prescribed Augmentin. Anyone know if this will still be effective?

I don't know what to do from here. Do I start a strict diet?

Gah.. :(
 
PaintedElephant, I don't know anything about SIBO, but I had chronic infections as a preteen and was put on long-term high doses of Augmentin. It just about destroyed my stomach and appetite (and I almost wonder if it had long-term effects which hurt me today). But I was about 13 years old. As an adult you should be fine. So, for infection it is VERY strong, and I hope in your case, very effective! Wish I could be more help. Good luck.
 
Cat-a-Tonic said:
Izzie, can you perhaps buy name-brand Nexium online? Here in the US it's available OTC (yes, the name-brand actual Nexium, not just generic) and it looks like it's available on amazon as well. Just a thought for you if you can only do name-brand meds like that.

As for your appointment, I think you should ask for the pH impedance test. I've talked about it in the past, it's where they put an NG tube in you for 24 hours and measure how many episodes of reflux you have, how acidic is your reflux, how many times does the reflux reach the top of your throat, etc. My upper endoscopies always look mostly fine aside from the small hiatal hernia, but my pH impedance test showed the true impact of how bad my reflux is (I think I've said this before, but I had something like 48 separate episodes of reflux, half of them reached the top of my throat, my longest single episode was over 5 hours long - that's some serious refluxing!). I definitely encourage you to put your foot down and demand that test - it really was eye-opening for me and my doctors as far as how bad my GERD really is.

Adadzio, those all sound like worthwhile blood tests to have. CRP (C-reactive protein) and ESR (elevated SED rate) are both inflammatory markers, so if you're inflamed they should* pick up on that (in about 10% of the IBD population, CRP and ESR will stubbornly be normal even in a terrible flare, so they're not an exact measurement but a decent general tool for most people). ANA can check for some autoimmune illnesses (not IBD though - I know it can check for Lupus and I believe RA as well). And those vitamin levels - iron, ferritin, B12 and D - are all good ones to look at, as those do tend to be low with IBD. Good luck and keep us posted on the results! I hope something comes back with a worthwhile result.

How's everybody doing today? I'm bleh. I had recently stopped taking the steroid suppositories finally, thought I might be doing better. Nope, not so much. Last night I had a bad episode of d followed by rectal pain and pressure - it sure felt like a new hemmie was forming. So, after 2 whole days of being off the steroid suppositories, I'm right back on them again. Ugh. At least they're helping, but I know I can't stay on steroids forever and I can't seem to not have constant hemorrhoids without them. The good news is that I see the colorectal surgeon next week, so hopefully she can do something for me. I'm not overly optimistic though. My GI is clearly out of ideas so I'm not sure what options this surgeon will be able to give me, and I don't really want to have rectal surgery as I know that fecal leakage/incontinence is a really common side effect. How cool would that be, at age 36, to start shitting myself on a regular basis. I'd rather stay on the steroids indefinitely than have to deal with that! Hah, maybe the surgeon can give me a temporary stoma to let my rectum heal for awhile. I honestly wouldn't be 100% against that actually but I'm guessing my insurance would never in a thousand years cover stoma surgery because of hemorrhoids. :p
Click to expand...

Oh yeah that's definitely the test I'm going to push for. The thing is with my reflux it's just so uneven. Some days I'm FINE and some, like yesterday, I had reflux literally non stop for 48 hours - like the really bad throat-burning kind. I think over the past year I've gotten a little paranoid about doctors not believing me :p

Shitting yourself on a regular basis does not sound fun, no. But pain and such isn't fun either, on the other hand. I hope the surgeon has some ideas!

Me, I'm doing a little better today. And by better I mean my reflux episodes have lasted 4-6 hours at a time rather than non-stop. So, it's all relative, I suppose. I called in sick to work and felt horrible for doing so because this doesn't seem like a "real" reason to call in sick to me for some reason? But I've felt truly horrible and I really needed to just rest and sleep and catch up on what little housework I had the energy to do.

I've lived on plain wheat crackers and Ensure for two days and as boring and bland as it is, it does help. It's like my system just needs a break.

Cat, do you find that your stools change during a bad reflux episode? I get D and just an all-over upset stomach, a lot of nausea and rumbling and feeling like I have a mild case of stomach flu, essentially. Wondering if this is a common reflux thing or something separate...
 
Painted elephant - my insurance didn't cover it either, but the manufacturer has discount programs if you still want to try it - if they'll write the Rx. I had to pay a lot, but not the full cost.

I am a wreck today. Sore everywhere. D since 3:30 this morning. I'm hoping its viral or food poisoning. No real fever at least.
 
Wildmtnhoney said:
Painted elephant - my insurance didn't cover it either, but the manufacturer has discount programs if you still want to try it - if they'll write the Rx. I had to pay a lot, but not the full cost.

I am a wreck today. Sore everywhere. D since 3:30 this morning. I'm hoping its viral or food poisoning. No real fever at least.
Click to expand...

We just don't have a lot of money right now, and my thyroid meds are expensive enough! I'm going to try the Augmentin. It was only $9.38 for 20 pills. Which is odd. Only 20 pills? That doesn't seem like a very long time. `10 days total. Does this seem right?
 
Izzie, the thing is, my GERD is also very up and down. And I had my pH impedance test done on a pretty quiet reflux day! Even so, I got a very strong result. So from my experience, I think you'll be okay even if you have the test on a relatively good day. They do advise you, when you have the NG tube in, to eat all your reflux trigger foods or do whatever activities will trigger your GERD. They want to get your reflux as riled up as possible for the test. So that part isn't fun, I was literally crying as I was trying to eat my trigger foods (it's not easy to eat with that NG tube in, either). That part definitely sucks, but it's only for 24 hours.

And yes, my stools definitely change during a reflux episode. During my worst episodes, I've been fooled into thinking that it's a gallbladder attack - my stools will turn pale, like the color of light sand. It's weird but they checked my gallbladder and it's fine, it's not the culprit for the pale stools (usually pale stools are a red flag that there's something going on with the gallbladder). So it's just my reflux although I have no idea how or why it can change my stools to that degree. I definitely get d, nausea, stomach pain (severe if it's causing a gastritis episode), no appetite, I just feel horrendous. It sounds like you and I experience a lot of similar things during a reflux attack! I'm sorry I don't have more answers for you as to why it happens, but you're definitely not alone.

And don't feel bad for calling in sick to work. You know your body best and it sounds like you really do need to rest and heal as much as you can right now. Take care of yourself and don't feel guilty. And don't do housework! :p Just get some rest!

Hah, so speaking of my colorectal surgeon appointment - my GI has been trying to get it moved up so that I can see the surgeon sooner, but no such luck. Well, finally today I got a call asking if I'm okay with them moving the appointment sooner!... by 1.5 hours. Appointment is still the same day as it was before, the 25th. I'm now going to be seen at 8:30 AM instead of 10 AM, whooppee. :p So yeah, I guess technically my appointment got moved to be sooner but not in any meaningful way whatsoever.
 
Cat, that's hospital administration in a nutshell. "We did what we said we were going to do!" Well yeahhh, but ehhh.

I'm having one of those days where I just can't handle the slightetst bit of criticism. If someone tells me "maybe it would be better if you tried doing so and so this way, and it would improve!" and I'm like "YOU HATE ME AND THINK EVERYTHING I DO SUCKS!!" and I just want to cry, basically :p I'm sure you all recognize the feeling. Days when you can't handle even the slightest bit of criticism.

BTW, does an NG tube trigger your gag reflex? Because I have a notoriously bad gag reflex and it just makes me panic even when I have to do a quick strep test.
 
Wildmtnhoney, I hope the GI is able to do something to help you feel better! I hope if they do say you have to go to the ED they at least do something to help so it's not a wasted journey.

Izzie, I agree with Cat, don't feel bad about calling in sick to work, sometimes you have to put your health first. If it's any consolation I had to call in sick today too.

In general I'm also in the feeling awful group today. Is it possible to have a mini flare in a flare?! I hope it's just something I ate, mum tried a new recipe last night and I think something in it disagreed. I was semi awake most of the night with the horrid burning, aching pain in my lower right, behind my navel and lower left, basically all in a band, as well as some pain just under my ribs. The pain has sadly continued all day and I've spent most of today curled up with my heat pad, then this afternoon I have had D 3 times in an hour and I can tell from the rumbling it's not done yet. Also nauseous and unsure if I'm warm or cold but either way I feel awful.

I'm phobic of being sick so I'm praying it's just a bad day and not a stomach bug as my mum is away now until Monday. Oh and I have a flat tyre so tomorrow have to get up and take my car to the garage first thing.

I'm getting seriously fed up of all this, I can't even stomach the idea of a fortijuce tonight never mind a meal. I don't even know at what point I ought to be chasing my follow up appointment, like, how ill do I need to get for them to care? I know I'm not having as much D as I was when I first went to the GP and got referred and I'm not as ill as some others but you would think with suspected IBD and inflammation on colonoscopy they would want to start some kind of treatment sooner rather than later?

I feel bad for moaning as the NHS means I'm getting tests I couldn't afford privately, but the endless waiting is so hard. I don't want to keep going to the GP's because all they do is tell me to wait for my follow up appointment, but I don't know what else to do :( sorry for the moan!
 
Wildmtn, oh no! This has been going on for way too long. I hope that if you do end up in the hospital, that they can do something to actually figure out what's going on and really help you this time! Keep us posted and take care of yourself.

Izzie, I have a pretty bad gag reflex too, but the NG tube didn't really bother me at all. The worst part of having the NG tube put in was getting it through my sinuses, but I'm pretty sure that's specific to me. When I was a kid, I broke my nose and it never healed right. My nose has been crooked ever since, and I've had sinus issues ever since. My right nostril is larger than the left, and the right nostril is the one that I tend to breathe out of most often. Basically my right nostril is the "good" one. So I explained about my nose to the nurse and asked if she could put the NG tube in the right nostril, as I figured that one had a better chance of getting the tube to go in. Nope! The nurse was rough, too. She repeatedly tried to jam the NG tube into my nose but it kept hitting something in my sinuses and wouldn't go in. I had so many tears running down my face and it hurt a lot! Finally after about 20 tries (literally), the nurse tried getting the NG tube in my left nostril, and fortunately it went in on the first try. So now I know, NG tubes in the left side only! That was definitely awful, but unless you have a really wonky nose like mine, you should be fine. The tube went down the back of my throat and sort of bypassed the gag reflex altogether. That part of it was just like swallowing something rather large and uncomfortable, but not bad. So don't worry too much about that.

Sarah, I also have, maybe not a phobia, but a definite aversion to vomiting, so I feel for you. I absolutely hate vomiting, it is my least favorite thing ever! It sounds like you probably did just eat something that really didn't agree with you - you might want to write down what you ate, so that if/when this happens again, you can look for what specific foods or ingredients might be triggering these symptoms for you. If you don't feel like eating, don't push yourself to eat, or just have something very small like a cracker and see how that goes. But, do sip water as much as you can - especially when you're having a lot of d, you need to make sure to stay hydrated. Room temperature water is easiest on the stomach, so stay away from water that's cold as it could cause cramping. Feel better soon!
 
I'm so sorry that everyone is feeling so horrible! :( Today hasn't been a good day for me either. And it's that time of the month, which always makes everything even worse. You don't think it can get worse, and then it does. Here's to hoping we all have some brighter days ahead of us.

It just makes me so mad that doctors don't care about us. Did they become doctors to help people or did they just want to make a bunch of money? I honestly don't know. It's crazy that pretty much all of us have been told we just have IBS. Or we have anxiety. Or we're fine and we're just chronic complainers. I just want a doctor who will take me seriously and not give up until I feel better. Every single doctor I've seen has completely given up on me. I don't understand how someone could do that. How can they be so heartless?

I just feel like my body is falling apart, you know? Everything seems to be wrong, and sometimes new problems will just pop up out of nowhere. Like now apparently I have high cholesterol.......after eating the healthiest I've ever eaten and exercising more consistently than I ever have before. Could it be related to everything else? I have no idea at this point.

Anyway, hang in there, everyone. I know how much it sucks, trust me.
 
I'm back home from the ED. I have diffuse inflammation, aka colitis, in my full colon, because this time I am C diff positive. None in the small intestine at least. I have a Rxs for vancomycin, pain meds, and zofran. They sent me home, but I can go back and be admitted if things get worse. I was supposed to go to the gp to beg for ANA testing tomorrow, but not now. I hope I'm well enough to see my GI on Thursday. They found lots of wbcs in my stool sample, with puss, and my neutrophils are high, calcium and potassium low...eck
 
I have probably had enough of the doctors for the time being. I'm going to still be around, but I am not going to try and worry about this too much. Probably when I do though, it'll be too late if something is wrong. :lol: But, for now, I'm just going to try eliminating certain foods. I'm currently on day 2 of gluten elimination. Stomach is pretty bad these last 3 days, but it'll probably get better. Who knows. I'm just tired from this all. I'm tired now and it's only 9am. :(
 
Akgirl, yep, I've been told by various doctors that it's IBS, that it's all in my head, that I'm just depressed, etc. You just have to tune out that nonsense - you know your body best, you know something is legitimately wrong, so ignore the bad doctors and keep looking for a good doctor. They're out there, sometimes they're just really hard to find.

Wildmtn, c diff sucks, but I'm glad that they at least found a cause for why you've been so ill. I hope the vancomycin gets rid of the c diff fast! As for the low potassium, that is typical when you're having a lot of diarrhea. You can lose potassium through sweating as well - that happens to me in the gym a lot. My potassium is always borderline, and when I sweat in the gym, sometimes it drops too low. I can tell when it drops, because then my feet and toes cramp up, which is really not a fun time. Have you been having foot cramping as well? If so, getting your potassium level back up should put a stop to that.

Kelleh, I hope the elimination diet goes okay. I think it's okay to take a break from doctors and testing for awhile, but at the same time, make sure you're listening to your body and do go get checked out if things change or get worse. How's the new job going? Oh, and how was your friend's trip to Japan?? Only 6 weeks until I go! Literally 6 weeks from right now, I'll be heading to the airport.

How's everyone today? I am doing better, probably because I put myself back on the steroid suppositories. I did have one sharp jab of rectal pain this morning, but other than that my hemorrhoid area has been fairly quiet. I did go ice skating yesterday which put my left knee in some pain (my joint pain is so weird, my right hip is worse than my left, but my left knee is worse than my right). I was even woken up briefly last night by knee pain! I don't think my knee has ever woken me up with pain before so that's new. I'm going to have to be a bit more careful of my knees I guess. It's so fun to have a falling-apart body and I'm only 36. Ugh.
 
Cat, his trip was really good. He has a journal, but he won't let me see it until I go around his. He basically wouldn't tell me much because he wanted to show me rather than tell me everything in one go, otherwise he'd be repeating himself! He did say that they say the Japanese people won't try and talk English, but he said this is completely wrong, and people actually tried to practice their English on him and his friend! But he said it was beautiful, but Tokyo was definitely not how he imagined it. He said it was a little bit like a normal town, rather than what we perceive it is with all the lights and technology. Also, something else rather cool he told me, was that in all train stations, even in little places outside of the cities, they have a bird song playing - which guides blind people to their trains, stairs and exits, which I thought was pretty awesome. He didn't get to try much food though, because the friend he was with was vegan, so he didn't get to try much sushi or anything particularly meaty in Japan. But he seems to have enjoyed himself! I'm going to see him in 2 or 3 weeks, so I will see his journal and hopefully tell you a little more!

I do need to get this fissure sorted unfortunately. It's on the side rather than the usual 12 o clock position, but it was caused by ripping, but I don't think that is normal. I would have a look but not sure it's really the best of things to look up whilst at work. :p My stomach has been pretty bad these last few days, but I just realised my period started today. Eurgh.

Knee pain is the worse! Just be careful if you're going to the gym, especially with your knees, because you can make them really bad! My mum has osteoarthritis in her knees, and she needs new knees now - but they just keep telling her she needs to lose weight first. Just do some low impact on your knees for a few days, and make sure you stretch! Don't know how far you've gone in terms of gym lately. Glad to hear you're feeling better today though, because nothing worse than everything going wrong at the same time!
 
Thanks Kelleh, I'll be very interested to hear more about Japan when you see your friend's journal! Thanks for the info so far, that's very helpful. The bird songs playing at the train stations sounds lovely! If I get lost when walking around I now know I can just listen for birds. :)

Yeah, I always do low-impact exercise anyway because of my bad hips. Although I am not really sure how high or low impact ice skating actually is? It seems pretty low-impact. I think the issue with ice skating is, my bad joints really do not like cold temperatures, and obviously with ice skating you have to do it in the cold! So I think that's the reason my knee was bothered, it was more to do with the cold than with the amount of impact or exercise that I was doing.

I have been hitting the gym regularly - I'm doing okay as long as I'm on the steroid suppositories. I've been doing mostly weights with some cardio thrown in. My joints are always okay with me doing weights, and as long as I keep my cardio low-impact (like bicycling) then my joints are fine with that too. So yeah, I'm doing mostly okay. Maybe I could put some sort of heat wrap around my bad knee the next time I go ice skating, to see if that helps.
 
Thankfully feeling a little better today but still increased pain and nausea.

However, two bits of good news, one relating to gastro stuff. First one my garage managed to do puncture repair rather than new tyre, so much cheaper which is great considering payday is like two weeks away haha. Secondly, I got a phone call from the hospital this morning and my consultant has had a cancellation Friday afternoon so I've been offered it for my follow up! It's such a relief! I'm guessing it's a good sign too that I've been offered a cancellation? Like surely they wouldn't bother if tests/biopsies came back fine?
 
Oh and Cat, I don't know if you have them in the US but here there is a brand of those disposable heat packs who make knee specific ones which are like a tubular bandage type thing with pockets on each side which you out heat packs in, they could be worth a look?
 
Afternoon everyone! Sorry to hear a couple of you aren't feeling well! That's a bummer.

I took my first dose of Augmentin today. Whew. I ate breakfast with it, and about 3 hours later the nausea kicked in! After I ate my lunch it seemed to have died down a but. I hope that it's only a day or so, and then it goes away! I also noticed I have "taste" of bread coming the back of my throat. LOL. So strange! Maybe the meds are already killing some bacteria? Who knows. I sound like a crazy person! haha
 
I never thought of it in that way - follow the birdsong if you're lost, regardless if you're blind or not. Doh! Definitely need something like that hear or even in the U.S. It's a lovely thing.

I guess ice skating is probably high impact, especially on the knees, hips and ankles, so it probably didn't help. Probably best to google it! Cold air definitely doesn't help, however, it's usually worse if it's a breeze. That's what gets mine quite a bit.

Think I'm going to attempt the gym tomorrow night. 1 day this week shouldn't hurt, and I'm feeling a little better today, so tomorrow I should feel so much better. Sounds like your energy levels have stayed up though, which is good news! Let's hope it'll be the same when you go to Japan. I'll make sure I ask lots of questions! Is there anything you want to know in particular?
 
Kelleh, yes, I'd like to know more about the trains in Japan. Particularly in the Tokyo area. It seems really daunting and confusing, I'm afraid I'm going to end up on the wrong train and get lost or something, and I obviously don't speak Japanese so I can't really ask for help or directions (I believe "hidari" is left and "migi" is right, but that's my entire knowledge of being able to ask for directions!). Just generally I guess, did your friend get lost, and how hard or easy was it for him to figure out the train system there? I won't be driving while I'm there, it'll be mainly walking and trains for me, and I have a terrible sense of direction. I can barely figure out the train system in Chicago and that's a much smaller city and obviously they speak English in Chicago. :p

I'm about to head to the gym shortly myself. Have a good workout tomorrow but don't push yourself too much, you don't want to end up feeling worse.

Sarah, thanks for that info, I will look into those heat pack knee wrap things! I'm presuming that I could always buy some online if I can't find them in a store here. I think those things are sold in stores though so I will definitely have a look.

So this is interesting. When I saw my GI last week, he asked me to try to come off of the steroid suppositories. Obviously that didn't work, I was off of them for 2 days but then had to go right back on them. I emailed him that to let him know. He knows I'm going to Japan, and his email response was to say that I can stay on the suppositories through my trip and then we'll re-assess. Phew! That's a big relief, that's honestly the outcome I was hoping for. I think my rectum just needs a longer time to heal, and this will give me like 9 more weeks to be on the steroids (I go to Japan in 6 weeks and I'll be there for 3 weeks). I'm very happy with that outcome. Hopefully 9 weeks is long enough for things to heal up properly back there.
 
I don't think he got lost, but I will ask for you now! I'll pop him a message. I wouldn't panic too much though!

I'll maybe do a 45 minute workout and hope for the best. Got my pre-workout snack ready for my energy rush before the gym!

Good job on getting your doctor to reconsider though! Hopefully you'll heal up. Hope they don't cause you too much discomfort though, as that wouldn't be great on your trip!
 
I spoke too soon about feeling a little better....
Had no appetite and mild nausea this afternoon, around 8pm realised I hadn't eaten since breakfast so made some ready break with a fortisip, then right after I finished eating, like ten minutes later, I had the worst D I've had in ages. So thanks to my emetaphobia I'm now terrified it's a stomach bug and my mum is away so I kind of just want to cry. But instead I think I'm heading back to the bathroom for more D. I really hope it's just a bad spell of my tummy stuff!
 
Thanks Kelleh! I just saw your other message, that's very helpful. Weirdly, I can read Korean but not Japanese, so I can read the signs in 2 of the 3 languages, just not the actual language of the country I'll be in. :p Hah. (Korean is actually super easy to learn to read, because it has an alphabet with only 24 written characters - Japanese is super hard to learn to read, though, there are many thousands of different written characters.) And yes, my mom bought us the rail passes already so we're set there. Thank you for the reassurance and please say thank you to your friend for me! :)

I just got back from the gym (went on my lunch hour) and I feel great. Your pre-workout snack, though, that's a foreign concept to me! With my GERD, I can't eat anything at all for at least 2 hours before working out. Even if I have something like a sports drink, that will still make me nauseous to the point of vomiting within 5 minutes of starting my workout. I can only have water and antacids, I guess that's my pre-workout snack. :p I do always eat right after a workout though, that part is fine with my GERD, so I had an omelet just now because I know it's good to have some protein after lifting weights.
 
Sarah, can you contact your GP and ask for some anti-nausea medication? Something like Zofran/Ondansetron could really help - that's what I take for nausea and it helps me a lot. It's obviously just for symptom relief, it's not going to treat the underlying cause of the nausea, but it could help you get through this rough patch. And, there's nothing wrong with crying! I do it all the time! This stuff sucks and it's okay to be emotional about it. I wish you lots of luck at your appointment on Friday - please keep us posted as to how it goes. Hopefully you get some answers!
 
Cat the brand of knee things I have is Cura-heat if that helps :)

As its out of hours now I will have to just ride it out but touch wood, things seem to be settling somewhat now finally. Still some nausea and hot and cold spells but things are more settled. Although I have been to toilet like 9 times in less than three hours... My poor hemmie is really annoyed but I daren't put anything on him until I'm sure everything has settled enough for it to have time to help. My usual areas of pain and burning are there though so I'm wondering if the extra pain I had Tuesday was a flare warning.

Either way I will be awake a while yet as not feeling well enough to sleep and I need to rehydrate as the D was very watery every time. Although now it's mostly mucus and nothing left to pass. Just the nausea is making rehydrating difficult but never mind, I will get there in the end!

Now more than ever I'm hoping for answers Friday to be honest.
 
I think I'm going to flunk out of school. Again. *sigh*

Being sick messes with my routines, which messes with my ADHD, which messes with my moods and tonight I've just been unable to finish the mountain of work I had to do by tomorrow. So I'll just skip, because I don't know what else to do. Am talking to a student coordinator type someday soon to see what can be done. I'm so sick of not being able to finish things! This is in part just me not being neurotypical, but being physically ill certainly doesn't help manners.

And then I get so upset that I eventually just give up for the sake of my own mental wellbeing. It's hard to focus on homework when you're either angry enough to start throwing things or upset enough that you're just kind of trying to do your assigned reading through tears and sobbing :p But then when I quit I feel like a failure and a disappointment to my entire family, so. That's not exactly better.


And yeah, I've had anti-nausea medication in the past and for me, it worked like magic.
 
Hi guys, been having a few extra GI issues and some other potential Crohn’s symptoms over the last 6 months. I have had colonoscopies, gastroscopy and pillcam and been repeatedly told IBS (with GERD). I also have arthritis with is causing major issues in several joints at the moment (back, ankles, knee, ribs). I am receiving treatment for the joint issues, but it is not helping much.

I went back to my GI doc saying I have been getting lots of mouth ulcers, night-time awakening lately along with the usual right lower quadrant pain. My blood tests at the moment show anaemia and raised CRP and ESR. I also have a couple of bumps on my shin and thigh that look suspiciously like erythema nodosum.

GI is going to do another colonoscopy and pillcam to see if there is Crohn's and if any evidence is found. I should be able to get Humira!! Feeling anxious and strangely excited about the tests.
 
Cat-a-Tonic said:
Thanks Kelleh! I just saw your other message, that's very helpful. Weirdly, I can read Korean but not Japanese, so I can read the signs in 2 of the 3 languages, just not the actual language of the country I'll be in. :p Hah. (Korean is actually super easy to learn to read, because it has an alphabet with only 24 written characters - Japanese is super hard to learn to read, though, there are many thousands of different written characters.) And yes, my mom bought us the rail passes already so we're set there. Thank you for the reassurance and please say thank you to your friend for me! :)

I just got back from the gym (went on my lunch hour) and I feel great. Your pre-workout snack, though, that's a foreign concept to me! With my GERD, I can't eat anything at all for at least 2 hours before working out. Even if I have something like a sports drink, that will still make me nauseous to the point of vomiting within 5 minutes of starting my workout. I can only have water and antacids, I guess that's my pre-workout snack. :p I do always eat right after a workout though, that part is fine with my GERD, so I had an omelet just now because I know it's good to have some protein after lifting weights.
Click to expand...

The question is, how can you read Korean? :p Glad to hear you have the rail passes already! They are all very geared up for tourists, which is really nice! My friend did say that everybody that was in Japan that was not Japanese, was actually a tourist. I'll tell him you thanked him, and also, if you do want to know anything else, I will ask him for you!

I eat about 45 minutes before the gym, which gives me enough carbs to do a decent workout. If I eat at 30mins beforehand, I get serious acid reflux and I just want to throw up! I always look forward to going home and having some dinner though. It used to be a case of getting home from work, eating, then going to Zumba or the gym. I do miss being able to workout straight after dinner though!
 
Lorikeetie said:
Hi guys, been having a few extra GI issues and some other potential Crohn’s symptoms over the last 6 months. I have had colonoscopies, gastroscopy and pillcam and been repeatedly told IBS (with GERD). I also have arthritis with is causing major issues in several joints at the moment (back, ankles, knee, ribs). I am receiving treatment for the joint issues, but it is not helping much.

I went back to my GI doc saying I have been getting lots of mouth ulcers, night-time awakening lately along with the usual right lower quadrant pain. My blood tests at the moment show anaemia and raised CRP and ESR. I also have a couple of bumps on my shin and thigh that look suspiciously like erythema nodosum.

GI is going to do another colonoscopy and pillcam to see if there is Crohn's and if any evidence is found. I should be able to get Humira!! Feeling anxious and strangely excited about the tests.
Click to expand...

Your symptoms sound very similar to mine, and I too have been told GERD and IBS. Hmm. What kind of treatment are you getting for your joints?
 
kellehbeans said:
The question is, how can you read Korean? :p
Click to expand...

켈레 비엔! 우ㅐ 한국어? 행복해 있오!
Kelleh Bean! Wae hankook? Haengbokhae isso! - Kelleh Bean, why Korean? It's happy! :D Ha ha, that's my terrible Korean grammar - seriously, it's a really fun language and not nearly as difficult as you'd think. Here's the Korean alphabet:
hangul.gif


When you talk to your friend again (I think you said he's going to show you his journal?), just generally I guess I'm wondering if there are any must-see places that he'd recommend. Like, I know there are going to be a ton of temples, but were there any that really stood out for him as being really special? Stuff like that. We're going to be in Tokyo, Kyoto, Nara, and the Mt. Fuji area mainly, so recommendations for those places would be great. I know the bamboo forest and the statue steps in Kyoto look to be really amazing, and we'll probably check out the huge fish market in Tokyo. I'm sort of a clueless American though and I don't know what else is really must-see!

Sorry to hear that so many are doing poorly today. I am too, but it's my own fault. The hubby made homemade pizza for dinner last night and it was sooo goooood. I stuffed my face, ate wayyy too much, and ended up feeling extremely full and ill and refluxy and just bleh all night. I barely slept because I was so uncomfortable. I told hubby, no more pizza for dinner! I really need to stick with eating very small dinners, that works so well for me when I stick to it. I apparently can't control myself around pizza though. Bleh.
 
Wish everyone was feeling so much better!

I did end up going to see my GP after all yesterday, and she did run the ANA, Rf and other testing! So far all that's come back is a new CBC, which shows my WBC has come down since I've started the vanco (was 10.2 with Neutrophils making up 9.3 of that, now down to 6.3) and the Rf came back negative (<10 with a ref range of 0-14) but I wasn't expecting to have rheumatoid arthritis, really. She also took xrays of my hips, which were mostly reassuring, just one extra "bit" of bone on the right (os acetabulum) which is really small. She said she'll definitely get me into PT for the hips, but wants to wait and see if I also need a rheumatologist referral so then she'd do both at the same time. I'm glad I went to see her.

still was up quite a bit in the night, and really going a lot of D this morning, too. I don't remember how long it took the meds last time to kick in for the c diff, but I'm thinking it was closer to 3 days, so I know I've gotta be patient (hard!). I've gotta get dh to get me more tylenol, as I ran out and I think I'm getting hot, again!
 
Y'all are doing better than me when it comes to east Asian languages—and I lived in Singapore ;)

I hope everyone is doing better…I had milk tea last night (speaking of Asian culture!) and while it was sooooo yummy, I've definitely been paying the price :( Joint pain is a little better. I'm feeling anxious still waiting for my blood results…especially because the PA said if they were normal she would call me shortly after I came in to get them done, which was early Tuesday morning. I called yesterday afternoon to check and make sure she didn't just forget to inform me of the results, and the receptionist said a nurse would call to talk, but no one did. So now I've got in my head that there was something wrong in the tests and that the PA wants to talk to my GP or something…we'll see. Of course I'm sure it's all normal...I'm trying to stop thinking about it…but the pain and fatigue is a constant reminder, and I was hoping to get this all sorted out before traveling tomorrow. Ah well…

I've stopped taking my meds…all I was doing was metamucil and Levsin/anaspaz, neither of which were helping the past two months and the fiber makes things 100% worse. My BM are regular right now anyway, minus the mucus/blood. I don't see my GI until March 9th but frankly I don't care if he yells at me :ytongue:
 
Wildmtnhoney I'm glad your GP agreed to run the tests and is willing to pursue it, I hope you're able to get some answers from them. Hope the C. Diff meds kick in soon for you!

Does anyone else get really nervous for follow up appointments with their GI? I keep trying to tell myself that if they were just going to diagnose IBS and send me on my way they wouldn't have bothered offering me a cancellation at such short notice, but I don't know if that's just wishful thinking?!

I'm hoping the inflammation on my colonoscopy was enough to convince them to at least dig deeper than IBS. Also going to ask about anti nausea meds as I've not been able to eat a meal since Monday and I feel awful from it. I managed a slice of toast and two biscuits so far today but that's it. I just can't face food between the nausea, the pain and the diarrhoea to be honest.
 
Izzie said:
Your symptoms sound very similar to mine, and I too have been told GERD and IBS. Hmm. What kind of treatment are you getting for your joints?
Click to expand...


I have physical therapy on them every couple of weeks and drug therapy. At the moment I am taking salazyprin, methotrexate and ciclospirin as my DMARD therapy. Amitriptyline, gabapetin, slow release tramadol for regular pain control and morphine for breakthrough pain. The immunosuppressants are not working very well and i don't qualify for funded biologic drugs through the rheumatology route (my sacroilitis was only on side). I am also scheduled for surgery on my shoulder and had 3 ankle surgeries (need another).
 
Well, finally heard back from the lab. My bloods were fine minus anemia and vitamin D deficiency. I'm definitely relieved. On the other hand, back to square one… :rolleyes:

PaintedElephant, you might have already said, so forgive me—but is there any way to speak to your GI or a nutritionist? I don't know the first thing about SIBO or a diet for treatment, so I would be stressed too. Sorry you're struggling.
 
I had what I think was some major heartburn yesterday (sent me off to the dr's AGAIN! they gave me a horrible mix of mylanta and lidocaine, then rx for pepcid and more zofran) and now it sounds like I'm losing my voice - can that happen from reflux??
 
Wildmtn, yes, it's possible lose your voice from reflux. I've had that happen to some extent, I haven't fully lost my voice from it but it has definitely affected my voice at times. Like my voice turns into a weird whispery squeak. You're on a lot of meds already, so you might want to call the doctor (again, sorry) and ask what reflux meds would be okay to take that wouldn't counteract or interfere with the other stuff you're on.
 
Thanks Cat. I failed to mention that although I told them i was pretty sure it was reflux, they did an ekg and chest xray - and they mentioned I may have aspirated some of it, like there might be fluid in my lungs because of it? GROSS. Anyway, I did ask just now, and because I have c-diff, and some stuff can stop you up potentially, and I can't have that, it's mylanta (which of course can give you D, lovely) or Gaviscon (same issue). Dh found Mylanta first so that's what I'm trying, along with the Rx strength pepsid 2x a day and zofran regularly. I swear I feel like a walking pharmacy.

How is everyone else today?? I really hope things are getting better for people!

On the bright side, I have just TWO more projects in 2 weeks and then I *graduate* with a BofS in Healthcare Admin. This would be a major career change for me, after being in telecom prior to kids, and then a stay at home mom. Of course, I need to be well enough to hold a job, but hey, it's a start, right?
 
Wildmtn, yes, it's possible to aspirate refluxate - I'm honestly not sure if I've ever done that or not, but I'm presuming I have as about half of my reflux episodes do reach the top of my throat and I have many reflux episodes a day according to the pH impedance test I had, so it's definitely feasible that some of it has gotten into my lungs at times. Ick. And yeah, I also feel like a walking pharmacy sometimes. I go to Japan next month, and I'm bringing along at least 7 prescriptions with me - Nuvaring, Zofran, Ranitidine, Nexium, Anucort (steroid suppositories), Amitriptyline, and Lialda. Plus a couple of vitamin supplements too. And I need to have at least 3 weeks worth of each medication with me because I'll be there for 3 weeks. I'm trying to pack light but that may be downright impossible with a chronic illness! I really hope they let me through customs with all those medications (I did get a note from my doctor saying that yes it is medically necessary for me to have and to travel with all those prescriptions).

As for being well enough to hold a job - somehow I've managed to hold down a full-time job the entire time (6+ years) that I've been ill. Family Medical Leave is your best friend, once you can get it (I think you have to be at a job a certain amount of time before you can apply for FMLA). Then they can't fire you for taking more sick days than the average healthy person would. It's certainly saved me a number of times! So definitely get FMLA as soon as you can once you have a job. And congrats on being about to graduate! That's fantastic that you were able to complete your degree while being so ill, you should be very proud of yourself. :)
 
Adadzio said:
Well, finally heard back from the lab. My bloods were fine minus anemia and vitamin D deficiency. I'm definitely relieved. On the other hand, back to square one… :rolleyes:

PaintedElephant, you might have already said, so forgive me—but is there any way to speak to your GI or a nutritionist? I don't know the first thing about SIBO or a diet for treatment, so I would be stressed too. Sorry you're struggling.
Click to expand...

I suppose I could, yes. The GI's office told me nothing other than "the test was positive, start meds" I asked them to mail me the test results so I could take a more detailed look. Everything I read online gives a pretty good idea of what I need to do, there are just several different diets to choose from. It's overwhelming. I'm going to focus on doing Paleo right now, in combination with LOW FODMAPS, and pretty much no sugar. See how that seems to work!
 
Well I'm back from my follow up appointment and to be honest I feel so deflated and let down I just don't know what to do anymore. I've cried like three times already.

So, all but two blood tests came back okay. My IgA is low and so is my vitamin D so I have to get some supplements from the GP to get my vitamin D up. No idea what the IgA being low means it wasn't explained to me, except normally it's low when the celiac test comes back positive, but my celiac test was negative.
My fecal calprotectin came back normal too, so did the H. Pylori stool test.

Then we got to colonoscopy results. The biopsys from the inflammation in my terminal ileum came back normal with no inflammation. The biopsys taken from my large intestine showed mild non specific inflammation. The kicker? The consultant is disregarding both of these because there wasn't enough inflammation for them to pin down a cause.

So that's it. She stated it's all IBS, I have to try buscopan as the mebeverine made my nausea worse and just control the symptoms with that, imodium and paracetamol. I see her in 8 weeks again and if symptoms are no better she will refer me to the dietician.

So basically the consultant has said it's just IBS and I have to put up with it. Honestly I'm really upset, I can't keep living like this, I can't keep going feeling this ill all the time. But I don't have the energy to keep going and fighting. I don't even know what to do next or where to go next.
Sorry for the moan :(
 
I feel for you all my refluxing friends, it's the worst. My voice is definitely affected by it. I used to sing a lot and these days I just don't, and I lose my voice quicker than I used to if I talk a lot in a day. I also occassionally get a bit of a dry cough for a few days around a bad reflux episode.

I'm doing okay, though my reflux is still really bad and I have to be sooo careful with what I eat. It's been a longer flare up than usual, over a week now, and I'm hoping it's not a permanent turn for the worse. Also been having mushy mucus-y stools. Seems to be connected to the reflux.

I'm trying to be positive, went shopping today. Took your nailpolish tip, Cat, and it's actually so fun. H&M has a new line of cheap cosmetics and such so I kinda went wild in there. And this evening I'm just having a little Taylor Swift dance party alone at home. While in pain and belching like Barney from The Simpsons, but you know.

I've discovered that I think sugar is a trigger for me? Like any time I eat a cookie or something very sugary everything's awful and my throat burns for hours. The list of things I can eat and remain somewhat stable is getting smaller and smaller. And that's making me shift focus from food and drink being celebratory or comforting or even social. Now I want to take walks with people and play board games and talk. And I haven't had enough alcohol to feel inebriated in like... well, 6 months or more, probably. I think maybe it's not an entirely awful side effect?
 
Thanks for the encouragement Cat!

Painted Elephant, good luck on the diet going forward.

Sarah, oh, I'm so sorry. I know, all too well, the IBS label and feeling like they aren't even trying to help you anymore. Since there was *some* inflammation found, would you maybe, at some point, consider taking that info to another dr for a 2nd opinion? In the meantime, I'm glad you came here to moan! Really, I feel like that's what we're here for - at least, I've done my share of it, and always been better for it later.

And...I have my own good/not getting diagnosed with anything today news -- ANA titers came back "negative" - they didn't even give me a titer #. So, yay! And, at the same time, back to: why on earth are my eyes drying up, my joints all annoyed, and my intestines randomly spitting out white blood cells?
 
Izzie, I hear you on not drinking and wanting to do other stuff with people. There are a lot of really fun/wacky board games on Amazon - one that a friend just showed me is called Galaxy Trucker or something like that, and then there's Killer Bunnies, Exploding Kittens...and a lot of adult ones that I don't get much time to play because I have a 9 year old and teens in the house and I just don't want *them* and their friends digging out a box of Cards Against Humanity at my house, ya know?
 
Sarah, I'm so sorry to hear it. All I can say is that I've been there too and it really, really sucks. You know something is really wrong and it's so awful to have a doctor try to tell you that it's "just IBS" and that you should be "fine" if you just take some IBD med or whatever. I've definitely been there, done that.

Here's what I'd recommend doing, based on my experience. Try the IBS meds they gave you - yes, it's very likely that they won't do anything for you. But at least try them so that you can definitively say that they didn't do anything. Then your doctors should see that you're still struggling and suffering and that will give you the footing to ask for further tests, different meds, whatever you think would help you most. And if your doctors still ignore you or still say it's IBS, then you need to find different doctors. I know, it's utterly exhausting and frustrating and you feel like you've hit a brick wall, but there are still ways to fight through this. I've been there and fought that fight, and I'm telling you, you can too. For now, it's totally okay to cry, feel upset and angry and whatever else you're feeling, throw things, punch pillows, scream and yell - it's all okay. And we're here for you anytime you need to talk. For now, do what it takes for you to be okay with having to fight a bit longer - then pick yourself back up and keep fighting towards proper answers. I'm sorry I don't have better ideas for you than that - that's what I've had to do for myself. I wish none of us had to go through this, my heart is breaking for you and I'm so sorry that you have to be in this situation, I really wish you had just gotten a proper diagnosis and could move forward with treatment that might actually help. For now, just take care of yourself, and when you're ready, pick up the fight again. I'm so sorry hun.

Izzie, yay, I'm glad to hear you treated yourself and are feeling positive! What colors of nail polish did you get? I am obsessed with sparkly nail polish, anything with glitter and I need to own it. Yeah, I think sugar might be a mild trigger for me as well. It's not as bad as some other triggers, but I do feel it sometimes. It's weird what will trigger a reflux episode for me - I've found that cucumber gives me horrendous heartburn, which is weird because it seems like such a cooling food, but it sets my throat on fire. I had a can of soup the other day that seemed to instantly come up my throat, too - it was just chicken soup, I don't know why that would cause a reflux episode! Certain soups like tomato soup I obviously avoid because of the acidity, but this was not a tomato-based soup. Weird.

Sometimes I belch like Barney from the Simpsons when I'm at the gym! I don't shy away from it, though. I've found that letting some loud belches rip in the middle of the gym, it really keeps the creeps (and everybody else) away from me. :p I sometimes get hit on or followed around by random guys at the gym, which is just icky - it's like, guys, I'm not here to find dates, I'm married as you can see by the ring on my finger, and I just want to work on my fitness and not have to interact with anybody. So belching loudly really takes care of that problem! And, I'm going to the gym tonight, so I'll be belching with you in spirit as I do my workout and will be thinking of you and your solo dance and nail polish party. :)
 
Cat-a-Tonic said:
Wildmtn, yes, it's possible to aspirate refluxate - I'm honestly not sure if I've ever done that or not, but I'm presuming I have as about half of my reflux episodes do reach the top of my throat and I have many reflux episodes a day according to the pH impedance test I had, so it's definitely feasible that some of it has gotten into my lungs at times. Ick. And yeah, I also feel like a walking pharmacy sometimes. I go to Japan next month, and I'm bringing along at least 7 prescriptions with me - Nuvaring, Zofran, Ranitidine, Nexium, Anucort (steroid suppositories), Amitriptyline, and Lialda. Plus a couple of vitamin supplements too. And I need to have at least 3 weeks worth of each medication with me because I'll be there for 3 weeks. I'm trying to pack light but that may be downright impossible with a chronic illness! I really hope they let me through customs with all those medications (I did get a note from my doctor saying that yes it is medically necessary for me to have and to travel with all those prescriptions).



As for being well enough to hold a job - somehow I've managed to hold down a full-time job the entire time (6+ years) that I've been ill. Family Medical Leave is your best friend, once you can get it (I think you have to be at a job a certain amount of time before you can apply for FMLA). Then they can't fire you for taking more sick days than the average healthy person would. It's certainly saved me a number of times! So definitely get FMLA as soon as you can once you have a job. And congrats on being about to graduate! That's fantastic that you were able to complete your degree while being so ill, you should be very proud of yourself. :)
Click to expand...


You should be ok with those meds. I am in NZ and went to the US for 3 weeks. Took Zofran, Amitriptyline, salazyprin, methotrexate injections, ciclospirin, omeprazole, tramadol, prednisone, morphine, plus a few over the counter meds. I got Drs note too, but no one ever asked! I was really worried about the morphine since it's a narcotic.

That is exciting going away soon
 
Wildmtnhoney - I think I am going to have to get a second opinion to be honest, I don't feel like this doctor has taken my concerns seriously and when I've seen her she just seems very keen to just get me in and out as soon as possible. I'm glad your ANA came back negative but I'm sorry it means no answers, it's so frustrating isn't it!

Cat - Thank you, I know it sounds daft but despite setting myself up for this in some ways another little bit of me hoped today would be the day I got my diagnosis and the start of some treatment. I think the bit I'm struggling with is why they have disregarded the inflammation, I was kind of under the impression that inflammation is inflammation. Like, I get that there were no ulcers and it wasn't severe inflammation that they found but surely that should warrant either more tests or trying some kind of treatment.
I don't even know how to keep going at this point. I will because I have to but I'm so exhausted and so sick of fighting for the chance to live a normal life. I'm so close to losing my job, I'm seriously underweight and slowly losing the will to carry on to be honest.

Tonight I have been doing some google research (as we do) and found contradicting information on very mild inflammation in IBS. Some things saying IBS does not cause any inflammation and some saying that in some IBS patients they sometimes find some very mild inflammation. So now I'm even more confused. However, then contradicting that I found that vitamin D being low is common in IBD especially Crohn's, and that low IgA can be linked to Crohn's/Crohn's can be linked to low IgA.

I just don't even know what to think anymore. My gut instinct still says IBD not IBS, but I will be honest, thanks to the appointment I'm now starting to doubt myself. Maybe it is just IBS and I'm just going to have to find a way to be okay with that and live with feeling so ill, but part of me can't accept that at 24 this is my life.
 
Cat-a-Tonic said:
Izzie, yay, I'm glad to hear you treated yourself and are feeling positive! What colors of nail polish did you get? I am obsessed with sparkly nail polish, anything with glitter and I need to own it. Yeah, I think sugar might be a mild trigger for me as well. It's not as bad as some other triggers, but I do feel it sometimes. It's weird what will trigger a reflux episode for me - I've found that cucumber gives me horrendous heartburn, which is weird because it seems like such a cooling food, but it sets my throat on fire. I had a can of soup the other day that seemed to instantly come up my throat, too - it was just chicken soup, I don't know why that would cause a reflux episode! Certain soups like tomato soup I obviously avoid because of the acidity, but this was not a tomato-based soup. Weird.

Sometimes I belch like Barney from the Simpsons when I'm at the gym! I don't shy away from it, though. I've found that letting some loud belches rip in the middle of the gym, it really keeps the creeps (and everybody else) away from me. :p I sometimes get hit on or followed around by random guys at the gym, which is just icky - it's like, guys, I'm not here to find dates, I'm married as you can see by the ring on my finger, and I just want to work on my fitness and not have to interact with anybody. So belching loudly really takes care of that problem! And, I'm going to the gym tonight, so I'll be belching with you in spirit as I do my workout and will be thinking of you and your solo dance and nail polish party. :)
Click to expand...

I'm usually one for black or dark burgundy or purple, but I'm willing spring into existance by going bright. Bought a retro-ish coral color that I love, and a bunch of other brighter ones too. I also bought some new workout clothes. I usually work out in ratty old t-shirts and I figured some pretty things would make me feel more comfortable at the gym.

On days when you're kiiiind of okay, it really does help to treat yourself or do something totally selfishly positive. On really shitty days I think it's important to just let yourself feel like crap, but it's just as important to grab those silver linings while you can.
 
I'm soooo glad I have my GI appointment in a week and I'm certainly hoping they can help me this time because it's not easy being productive when you're up until like 3 in the morning every night because it feels like a tiny fire demon lives in your chest.

Has anyone else heard of PPIs being linked to dementia?! Someone linked me to some article today about it and I usually take all that panicky side effect stuff with a pinch of salt but I have a relative with dementia and eh... no thanks.
 
Last edited:
Sarah - I'm so sorry for what you're going through, but I can completely relate to how you feel! At this point, I'm so tempted to just give up and stop going to doctors (because they never help anyway and they just steal all my money), but then I can't imagine feeling like this for the rest of my life, so then I'm tempted to try out a new doctor. And I cry almost every day, so don't even worry about that. It's like no one believes that we can feel this horrible every single day. But we do! I worked for a year while being sick, until I just couldn't do it anymore. Now I'm going to school, but I'm about to quit because it's just too hard while I'm sick. So I understand your worries about your job too. I don't really have any advice for you, unfortunately. But your posts make me feel a little better, because you sound just like me! I'm so tired of the IBS cop-out diagnosis. I didn't think my 20s would suck so much.

PaintedElephant - Let us know which diet you decide to do. I did the SCD, so I can give you some tips if you need them. :) Coconut flour was my best friend!
 
Izzie I saw that article too and had similar thoughts, my man had Alzheimer's and I really don't fancy any increased risk of that! However, I've tried ranitidine instead and really didn't get on with it so I think for now I will have to live with the increased risk.

Akgirl I'm sorry you're in the same boat but like you, I'm glad it's not just me! I'm one of those people who likes to do their research and thanks to my other conditions I know my own body well, I know something more than IBS is going on and I just need the doctors to figure it out. I feel like given the things they have found out already they should be looking a bit harder, especially at my small intestine, but instead they are saying that because the inflammation wasn't bad enough they are ignoring it, which to me seems so wrong. I'm going to be pushing for a second opinion, tomorrow I start the joys of calling round to get that ball rolling.
 
Totally lost

I'm really not sure what is going on, I've had 14 pelvic operations due to endometriosis & then a hysterectomy & then both of my ovaries removed at separate times & now I'm had to go back in for surgery because I was having severe pelvic pain. I had a colonoscopy done & I was told I had irritable bowel syndrome, but crohns disease does run in my family. When I had the colonoscopy done everything looked good. Recently when I went to the gyn/oncologist who did my previous surgeries he said he would have to open me up again to see what was going on, but he already knew he was going to have to remove the femoral nerve & ilioinguinal nerve due to the symptoms in told him I was having & he had done in it in the past when he removed the left ovary. When he came out to talk to my family he said everything went fine, but said nothing about the abdominal tumor, the repair of large intestine perforation, removal of pelvic lymph nodes, bladder wound & repair of bladder pouch. When I went back to see him in one month for my post op appointment that is when he told me about the 5cn abdominal tumor removal, but not to worry cause it was benign. Since the surgery is have had worse pain than I did prior. I take pain meds due to the car accident that I had that caused me back & neck surgery, but they are not even helping the pelvic pain. I went back to the doctor who did the surgery & told him how bad I'm feeling & he gave me a script for some dilaudid & said he wants me to go to a pain management doctor to have him kill more nerves, but after seeing the bill for my surgery & seeing all these other things mentioned, I don't know if that's what I should do. Since the surgery in November 2015 I have had a couple bladder/uti infections & have had some constipation, which is never suffered with before. I went to the e.r. 3 times cause I was in so much pain & my legs were swelling so bad that my skin was splitting a bit & they gave me 2 shots of pain medication & sent me home. I've been doing research prior to knowing all of the things that were done during surgery, I'm requesting a copy of my surgical report from the surgeon. But I've read about pelvic congestive syndrome, pelvic dysfunction & interstitial cystitis & I have symptoms to all of these & I've actually made an appointment to south Florida vascular institute since I'm having no luck getting answers from the other doctors, but now that I know I had a perforation in the large intestine, a bladder wound & a tumor I honestly don't know what to do. All I do is lay on the couch or in bed & cry & it's affecting my relationship sexually cause I'm in to much pain & my boyfriend doesn't know how to help so it's causing a strain on our relationship. All I want are answers & for this horrible pain to stop. I don't know if the vascular institute is the right place to go. I'm so stressed, I just feel lost. I'm on disability since the car accident so money is very tight. I just don't know what to do & it's making me so very depressed. I've never posted on here so I don't even know if I'm doing this right
 
Last edited:
Thanks Lorikeetie, that's good to hear that they gave you zero hassle about bringing your medications with you on your travels. I'm hoping for similar, I'm guessing that they see a lot of people come through with medications and they're not bothered when someone has a handful of different meds with them. Yes, I'm very excited, I've never been to Japan before and it looks like such a cool place! I'll definitely post updates and photos in late April when I get back.

Hi Jenno5143, welcome to the club. I hope you can get some answers soon. It sounds like you're a very complicated case with all of that going on! Hopefully you can find a good doctor who can figure things out. Keep us posted on what happens and how you're doing.

How's everybody today? I've had a really rough day. My grandpa has been talking about stopping his dialysis treatments, which would mean death, so I've been super stressed and upset at that possibility. It sounds like for now he's going to continue with dialysis, we think, but he's just about given up on life (he's 84 and has been very ill for 9+ years, plus he has to deal day and night with my grandma who has some type of dementia - probably alzheimer's - and all she does is fight with him, so it's understandable that he's basically done with life). So yeah, it's been a troubling day. My guts are feeling the effects of the stress. And I don't know for sure that my grandpa is okay for the time being, so I can't exactly de-stress. It's not good and I'm not okay today.
 
Cat-a-Tonic said:
Thanks Lorikeetie, that's good to hear that they gave you zero hassle about bringing your medications with you on your travels. I'm hoping for similar, I'm guessing that they see a lot of people come through with medications and they're not bothered when someone has a handful of different meds with them. Yes, I'm very excited, I've never been to Japan before and it looks like such a cool place! I'll definitely post updates and photos in late April when I get back.

Hi Jenno5143, welcome to the club. I hope you can get some answers soon. It sounds like you're a very complicated case with all of that going on! Hopefully you can find a good doctor who can figure things out. Keep us posted on what happens and how you're doing.

How's everybody today? I've had a really rough day. My grandpa has been talking about stopping his dialysis treatments, which would mean death, so I've been super stressed and upset at that possibility. It sounds like for now he's going to continue with dialysis, we think, but he's just about given up on life (he's 84 and has been very ill for 9+ years, plus he has to deal day and night with my grandma who has some type of dementia - probably alzheimer's - and all she does is fight with him, so it's understandable that he's basically done with life). So yeah, it's been a troubling day. My guts are feeling the effects of the stress. And I don't know for sure that my grandpa is okay for the time being, so I can't exactly de-stress. It's not good and I'm not okay today.
Click to expand...

That's a difficult situation Cat, I'm sorry you (and your family + grandfather) have to deal with it. I have an elderly relative with dementia as well so I know how taxing it can be, I can't imagine having to be a caregiver 24/7. Hopefully things will look brighter for your grandfather soon.

I have to get up in 3 hours to get to class, personally. My sleep schedule is really off due to nighttime reflux and it's hard for me to just reset into a normal rhythm if I have a good day here and there.

I've been struggling a little with feeling lonely lately. I had a family member come visit me from out of town today, just a short visit, but when she was leaving I almost cried. Felt like a kid being left at daycare or something. Super silly, really. I haven't really established much of a social life in this new city yet, and what little spoons I have go to work and school so I'm not making much time for the couple of friends I do have. I'm also kind of tired of being single? But also in no position to really try and date at the moment when everything is so chaotic. I don't know. Maybe I should get a cat and start my journey towards becoming a full-fledged cat lady :D
 
Cat I'm sorry to hear about your grandfather, I can't imagine how tough that must be for your family.

Izzie I totally understand how to mean with the loneliness, I have maybe three real friends and find it so hard to socialise these days with everything going on. I would love to start dating again but I know I'm not well enough and that nobody is going to want to date me while my health is such a train wreck. It sucks. I already have two cats so I think I'm stuck as a cat lady now.

I'm having a rough day today to be honest, after spending the night awake due to pain (lower left rather than lower right strangely) which as well as my usual burning type pain had episodes of sudden sharp pain, I gave up and went to the GP this morning because I just feel awful, I could only just drag myself out of bed for that. As always it was pretty much a waste, I got a sick note and my vitamin d and buscopan prescriptions, but no help regarding my low weight and the effects I'm getting from that.
Today I just really want to give up. I actually don't want to do this anymore. I don't have a life, I just want to feel well again. I'm still doubting myself in terms of feeling like there is more to it than just IBS and I'm starting to wonder if it's even worth getting a second opinion and whether I should just accept the IBS diagnosis and try to push through feeling like this. I just feel so lost.
 
Thanks guys. I'm doing somewhat better today. I'm going to see my grandparents on Sunday, so I should find out a lot more info then. My grandpa said he'll call me today, too, so I'm hoping he can put my mind at ease at least somewhat (I know he has dialysis today, so he can at least confirm for me that he did go to dialysis today). Both my grandparents are declining a lot, my grandma mentally and my grandpa physically, and they're both in their 80s, so I know they won't be around much longer. Still, it really hit home when faced with the possibility that my grandpa might stop dialysis, because that means he'd die within a matter of days, and that's terrifying. The stress of this has taken a big toll on my family for sure - my dad burst out crying yesterday and normally he is not an emotional guy (he didn't even cry when his best friend from college died suddenly of a heart attack).

Izzie, there's no shame in being a cat lady! I only have the one cat myself but sometimes one is all you need to be a cat lady at heart. My cat is almost 13 and I'm slightly freaked out because she's getting a bit too old and I just want to freeze her in time. I've had her since she was a tiny kitten and she's the best cat ever, she follows me into the bathroom and keeps me company in there and she keeps a close eye on me when I'm not feeling well. She "gets" chronic illness better than most humans I know and I prefer her company to most humans too. :) So feel no shame, if you want a cat then definitely get a cat! Cats are the best!

Sarah, I'm sorry that your GP has been so unhelpful. Is there a different GP that you can see? I'm lucky, I've had the same GP for years, and he's always felt that I have some form of IBD. I have to periodically re-apply for FMLA at work so that I can take sick days without getting in trouble, and my GP has to fill out some of the paperwork for that. On the form, it's okay for him to put "undiagnosed" as the medical condition, but he's always written "IBD - colitis" on the form, that's how seriously he takes me. Long story short, good GPs who take you seriously are out there! I do think getting a second opinion from a new GI and a new GP are in order for you. You can't continue on like this, and your doctors sound to be very unhelpful, so the reasonable solution seems to be to find better doctors.

I definitely have those days too, where I just want to give up and cry and not do this anymore. I call those my pity-party days. And on those days, I just allow myself to let it all out - cry, feel sad, be angry at the world, hide away from the world, cry some more, whatever it is that I need to do. But, I try to limit that to one day at a time. So I have my pity-party day, and then the next day I pick myself up and carry on with my life and with fighting for my health. That's the best way that I've found to be okay most of the time, is to allow myself to be absolutely not okay for a day every so often. Once I get the not-okayness out of my system for a bit, then I'm okay for awhile.

Oh, and for what it's worth - if it were me, I would not accept the IBS "diagnosis". You don't lose weight like that with IBS, and it doesn't keep you awake at night with pain. What you have sounds pretty clearly like something more than "just IBS" to me and I do encourage you to keep fighting for real answers.
 
hey everyone!

I've been kind of depressed since I got my SIBO diagnosis last week. I keep getting diagnosed with things that keep making my eating choices smaller and smaller. Celiac was hard enough. Now, with SIBO I move to not being able to have hardly ANY carbs, or sugar. I do not understand how I'm going to live without carbs? I get very tired/exhausted especially around my period when I don't have enough carbs. There is only so much squash I can eat. :(

I've started doing SCD/Low Fodmaps, but it's incredibly difficult. Nothing seems satisfying. I get full from my meals, but mentally, I just feel blah. The food is not "bad" or anything, it's just really mentally exhausting to think this is how I SHOULD eat for the rest of my life, or until I figure out the REAL cause of my SIBO (which I may never find out?). It's also overwhelming you can only have 1/2 cup of something to keep it low fodmap and then you aren't supposed to eat for 4-5 hours! So I'm starving all the time.

We are going on vacation in April, and I could just cry thinking about it. I know food should not affect me this much mentally, but it's vacation. It's Disney World! I don't even know how easy it will be to maintain SCD there. *SIGH*

Maybe my scopes next month will find something that explains the SIBO? Who knows.

Sorry to be so negative. This is just a LOT to take in.
 

Similar threads

K
Possible Crohn’s disease
Replies
10
Views
1K
musicalwiz
M
R
Nearly 4.5 years in with Crohn's.
Replies
2
Views
959
ras96mg
R
C
Your thoughts, please. 10 yr old.
Replies
9
Views
522
Maya142
Maya142
N
Advice on diagnosis
Replies
1
Views
970
Scipio
Scipio
K
So confused after apparent relapse
Replies
6
Views
1K
Opieshuffle13
O

Latest posts

Back
Top