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Just got my appointment today for the gastric emptying study. I actually had to call the scheduling department because it was sent on Friday, but I never got called. My appointment is Monday, the 19th, at 10:30am at the hospital's imaging department. They told me it would take about 1.5 to 2 hours. They are using egg salad, but I'm bringing my own GF bread, just in case. I hope this gives a diagnosis as I have been really having nasty nausea the last few mornings which eases up as the day goes on. :(
 
The shasttuc emptying study is suppose to done over4 hours
Two hour studies don't "catch " all of thise with delayed gastric emptying
Standard meal is scrambled egg(with tracer) and two pieces of toast
Eaten within a set time
Scan at hour zero(just finished eating
Then every 15 minutes fir the 1st hour then every 30 minutes until 4hours or less than 10% of the meal is left in the stomach which ever comes first

Anything above 10% left after 4 hours is considered
 
It is supposed to be 4 hours - we also had it done with scrambled eggs and toast. At our hospital, they only send you home at 2 hours if your stomach is SO delayed that there is no way the stomach will have <10% left after 4 hours.

We stayed the full 4 hours. My daughter's stomach had about 40% of the meal left at 4 hours.
 
Hi, I'm new here...
I'm 24, new here, but not new to this.
I've been dealing with this since I was about 16 when my gall bladder started to kind of go awry. I had it taken out and that's when the pain started.
I feel like I'm dying from the inside out.
When the pain starts, it is a burning, sharp, I just ate glass, crippling, throw me to the ground, pain. It starts in my lower right part of my stomach, just under my belly button, and then seizes my entire stomach and radiates through my entire body.
I've had constant nausea, unintended weight loss, chronic fatigue, nocturnal BMs, small bouts of fecal incontinence, blood in my stools, blood in my vomit, constant abdominal pain, mucous in my stool, black stools, pain triggered by certain foods, feeling like I haven't fully relieved myself when using the bathroom, pain from not eating enough or too much, bloating.

My joints are often very very sore, but never swollen.
I've come down with pneumonia, bronchitis, upper respiratory infections, sinus infections, (oral)strep B, and oral thrush since December.
I have had a UA done which came back positive for white blood cells, but no Uti.
I have had 2 upper endoscopies, one colonoscopy, and three capsule endoscopies.
My first endoscopy and colonoscopy were done together in January 2017, and came back clear, aside from some mucous in my stomach.
On March 3rd, 2017, I had my 1st capsule endoscopy done, and the report showed "erythematous villi in the proximal jejunum. Visible vessel with petechia in midjejunum. Possible submucosal bulge in proximal ileum."
I was informed that this is inflammation, ulceration, and a possible abscess or tumor, but they weren't sure.
It took 7.5 hours for this capsule to evacuate my body.
Then somehow, when I asked them to go back over these images, no one seemed to know how to locate these files except the black and white images that are "too dark to see anything."
I was immediately sent back for blood work, where a lot of things have come back low end of normal, although from the looks of it my numbers are slowly heading in a negative direction and my WBC is consistently staying in the 9-12 range.
I was sent for a CTE which came back normal.

I was then sent for a patency test to ensure I could completely pass a capsule. The first patency pill got hung up in my bowel loops. And did not ever leave my system until it started to dissolve 30hrs after swallowing it.
They did a second, and that one passed after the 30 hour mark.
I was then sent for a second capsule study, which, after four and a half hours, had still not left my stomach and they had lost visualization after having a meal. This came back, obviously inconclusive.
It took 42 hours for this capsule to evacuate my body.

Two weeks later, on June 6th, I was sent back for a 3rd capsule study to be placed by EGD.
During my endoscopy, they discovered a 1-2cm Hiatal Hernia, mucous, bleeding and "mildly diffuse" ulceration was found in the "gastric body" and "gastric antrum". I was told this was just "gastritis" and the hernia was likely from all the vomiting I have been experiencing, but they hadn't caught any of this on the capsule study two weeks prior and they could not give me a valid reason why.
They placed the capsule in the the beginning portion of the small bowel, and then removed the EGD tube.
This capsule study came back "clear".
It took 49 hours for the capsule to evacuate my body.

Im now being brushed aside and told it's likely all just IBS and I have no idea what I'm supposed to do, and they're telling me that they have no more tests to run.
I've been dealing with this for seven, almost eight years, if I don't get to give up, then no one else should? How much longer do I have to beg to be heard?
Is this "JUST IBS?"
Is it really possible for all of these things to just manifest out of nowhere and then suddenly disappear?
I really need help.
🙁
 
Hi, I'm new here...
I'm 24, new here, but not new to this.
I've been dealing with this since I was about 16 when my gall bladder started to kind of go awry. I had it taken out and that's when the pain started.
I feel like I'm dying from the inside out.
When the pain starts, it is a burning, sharp, I just ate glass, crippling, throw me to the ground, pain. It starts in my lower right part of my stomach, just under my belly button, and then seizes my entire stomach and radiates through my entire body.
I've had constant nausea, unintended weight loss, chronic fatigue, nocturnal BMs, small bouts of fecal incontinence, blood in my stools, blood in my vomit, constant abdominal pain, mucous in my stool, black stools, pain triggered by certain foods, feeling like I haven't fully relieved myself when using the bathroom, pain from not eating enough or too much, bloating.

My joints are often very very sore, but never swollen.
I've come down with pneumonia, bronchitis, upper respiratory infections, sinus infections, (oral)strep B, and oral thrush since December.
I have had a UA done which came back positive for white blood cells, but no Uti.
I have had 2 upper endoscopies, one colonoscopy, and three capsule endoscopies.
My first endoscopy and colonoscopy were done together in January 2017, and came back clear, aside from some mucous in my stomach.
On March 3rd, 2017, I had my 1st capsule endoscopy done, and the report showed "erythematous villi in the proximal jejunum. Visible vessel with petechia in midjejunum. Possible submucosal bulge in proximal ileum."
I was informed that this is inflammation, ulceration, and a possible abscess or tumor, but they weren't sure.
It took 7.5 hours for this capsule to evacuate my body.
Then somehow, when I asked them to go back over these images, no one seemed to know how to locate these files except the black and white images that are "too dark to see anything."
I was immediately sent back for blood work, where a lot of things have come back low end of normal, although from the looks of it my numbers are slowly heading in a negative direction and my WBC is consistently staying in the 9-12 range.
I was sent for a CTE which came back normal.

I was then sent for a patency test to ensure I could completely pass a capsule. The first patency pill got hung up in my bowel loops. And did not ever leave my system until it started to dissolve 30hrs after swallowing it.
They did a second, and that one passed after the 30 hour mark.
I was then sent for a second capsule study, which, after four and a half hours, had still not left my stomach and they had lost visualization after having a meal. This came back, obviously inconclusive.
It took 42 hours for this capsule to evacuate my body.

Two weeks later, on June 6th, I was sent back for a 3rd capsule study to be placed by EGD.
During my endoscopy, they discovered a 1-2cm Hiatal Hernia, mucous, bleeding and "mildly diffuse" ulceration was found in the "gastric body" and "gastric antrum". I was told this was just "gastritis" and the hernia was likely from all the vomiting I have been experiencing, but they hadn't caught any of this on the capsule study two weeks prior and they could not give me a valid reason why.
They placed the capsule in the the beginning portion of the small bowel, and then removed the EGD tube.
This capsule study came back "clear".
It took 49 hours for the capsule to evacuate my body.

Im now being brushed aside and told it's likely all just IBS and I have no idea what I'm supposed to do, and they're telling me that they have no more tests to run.
I've been dealing with this for seven, almost eight years, if I don't get to give up, then no one else should? How much longer do I have to beg to be heard?
Is this "JUST IBS?"
Is it really possible for all of these things to just manifest out of nowhere and then suddenly disappear?
I really need help.
🙁
Welcome. I am sorry for all you have been through. I would keep fighting until I got some solid answers . Sending support.
 
Thank you for your kind words, they're very much appreciated.
I'm fighting hard, but I'm so frustrated I just don't know where to turn to anymore.
 
Hi trinity,

Welcome, I'm very sorry to hear of all the struggles you have had to deal with, that's not fair at all. I hope you find some new friends and some answers on this forum. I'm around to talk quite a bit, feel free to pm me or talk to me on this thread.

Welcome again,

cmack
 
Ronroush7: I need one, but I'm not even sure where to start with that.
My insurance requires a referral to every specialist I see, so I have to have a referral.
If I ask this GI or my GP for a referral, it could very well be denied, and the city i live in is the same healthcare network, and they have a notorious habit of losing my records and/or dismissing and negating my issues. Which is great.
My only options are to be referred out to the University of Minnesota, or to the Mayo Clinic, and I'm not honestly sure that they'll take my case or how to go about that either. I feel so swamped.
I JUST got done dealing with a year long fight to get a fibromyalgia DX and then i was DXd with Trigeminal Neuralgia in January '17. I'm not in pain killers because I have a huge intolerance to them, so I'm incredibly burnt out and just lost with this.
 
Hi trinity,

Welcome, I'm very sorry to hear of all the struggles you have had to deal with, that's not fair at all. I hope you find some new friends and some answers on this forum. I'm around to talk quite a bit, feel free to pm me or talk to me on this thread.

Welcome again,

cmack

Thank you for reaching out with your kind words, finding friends and support is definitely something I need right now in this.
I've been lurking through this thread for a few weeks to see if I could see if I could maybe find something or some answers somewhere.
It's actually been very helpful, and you all seem very kind and supportive.
 
Cmack: thank you, I'm thank I found this too. I really look forward to getting to know you, and others too.
And I've had a few friends in Mayo, I don't live far from it, I'm also from MN so I've heard many stories from all over the spectrum on how Mayo is when it comes to patient care and empathy to Dr competency. It's more often positive though, atleast. They do have Crohn's disease specialists, which is important, but I worry that they won't refer me or take my case because I don't have a diagnosis or a positive study.
 
Undiagnosed here as well, I do have a diagnosis of permanently disabled due to surgical procedures. I think if I would have had a specialist to begin with I would still be working. I mean my life isn't totally destroyed but I could have ended up better I suppose. I got a very caring general surgeon, he tried his best but I'm pretty mucked up. I wish better for you.
 
I've received a diagnosis of permantly disabled as well due to this, chronic fatigue syndrome, fibromyalgia, Trigeminal neuralgia, depression, and anxiety. I'm fighting disability right now and I have a seven year old, so I'm feeling a lot older than I'm supposed to be.
I'm greatful so far I haven't had many surgeries or procedures, just a lapcholy, those scopes, and a few nerve blocks to my face that I wouldn't wish on my enemy. I wish better for you as well, I hope you're feeling well, and if you're not, I wish you better.
 
Hang in there, there are treatments that may very well improve things. I'm hopeful that I may be retrained. There are jobs for disabled people it's just a little harder. Together we are strong! :)
 
That would be so awesome haha! I used to run my own store two years ago before I was fired for "under performance". I've worked a few times in between, and man.. not working SUCKS. I start pool therapy in a few weeks and I'm hopeful it helps with some of my spasms and muscle pain. And who knows about everything else? Maybe exercise will be good, I don't know. Haha.
 
Hi Tim: I hope the appointment with the new doctor goes well and they give you some answers. Let us know how you are.
 
It is supposed to be 4 hours - we also had it done with scrambled eggs and toast. At our hospital, they only send you home at 2 hours if your stomach is SO delayed that there is no way the stomach will have <10% left after 4 hours.

We stayed the full 4 hours. My daughter's stomach had about 40% of the meal left at 4 hours.

I wonder if they just tell patients it's 1-2 hours but it can last 4 hours. I wonder if I should call them and ask the procedure. I told my boss I would try to come in that afternoon, but I won't be able to if it's 4 hours long.

I'm bringing my own GF bread since I have Celiac disease.
 
MissLeopard my GES was 2.5 hours long but it used a different meal (cottage pie but only the mash was radio labelled) so I think that had some impact on it. Either way it picked up my gastroparesis and they worked out from it my emptying is double what it should be. They didn't give me a percentage just times.

I spoke to my consultant today and I'm back on the admission list to go in and try the NJ again so just got to wait for the call to say a bed is available. She has said early next week all being well but it could end up being the week after depending on beds. I'm pretty nervous if I'm honest, I'm just worried the same thing could happen again even though all my bloods etc at the time point to it being some sort of infection that made me so poorly. I guess I will just have to wait and see how it goes!
 
MissLeopard my GES was 2.5 hours long but it used a different meal (cottage pie but only the mash was radio labelled) so I think that had some impact on it. Either way it picked up my gastroparesis and they worked out from it my emptying is double what it should be. They didn't give me a percentage just times.

I spoke to my consultant today and I'm back on the admission list to go in and try the NJ again so just got to wait for the call to say a bed is available. She has said early next week all being well but it could end up being the week after depending on beds. I'm pretty nervous if I'm honest, I'm just worried the same thing could happen again even though all my bloods etc at the time point to it being some sort of infection that made me so poorly. I guess I will just have to wait and see how it goes!
Hope the best for you.
 
I spoke to my consultant today and I'm back on the admission list to go in and try the NJ again so just got to wait for the call to say a bed is available. She has said early next week all being well but it could end up being the week after depending on beds. I'm pretty nervous if I'm honest, I'm just worried the same thing could happen again even though all my bloods etc at the time point to it being some sort of infection that made me so poorly. I guess I will just have to wait and see how it goes!

Good luck Sarah!! Try to remember your experience was REALLY not typical - I've never heard of such an awful reaction to an NJ tube. You might have some belly pain with the feeds for a bit, but that should be it.

And of course, your nose/throat might be a little sore from the insertion. My daughter's NJ tube was thicker than her NG tube so it was not her favorite to say the least (she was also a teenager and very self-conscious). But it worked wonderfully for her Gastroparesis!!
 
MissLeopard my GES was 2.5 hours long but it used a different meal (cottage pie but only the mash was radio labelled) so I think that had some impact on it. Either way it picked up my gastroparesis and they worked out from it my emptying is double what it should be. They didn't give me a percentage just times.

I spoke to my consultant today and I'm back on the admission list to go in and try the NJ again so just got to wait for the call to say a bed is available. She has said early next week all being well but it could end up being the week after depending on beds. I'm pretty nervous if I'm honest, I'm just worried the same thing could happen again even though all my bloods etc at the time point to it being some sort of infection that made me so poorly. I guess I will just have to wait and see how it goes!


Thank you for your input. We'll see how it goes with the test. I've been to this hospital department before for a HIDA scan and it went really well, which is why I chose them again.

I'll say some prayers for your NJ tube placement. I hope it goes better this time than last.
 
Hi everyone. I haven't posted in a while because I've been too sick, and I knew all I would do is complain! I have been reading everyone's posts though, when I can. I just seem to be getting worse and worse for some reason. It's really bad. I told myself that 2017 was going to be the year that I got better. Turns out it's the year that I got even worse. I can't even leave my house anymore. And I can't find a doctor to help me. But that's all the complaining I'm going to do, because I wanted to reply to a couple people.

Sarah, I really hope the tube placement goes well. What you went through before truly sounds like a horror story. I'm honestly really proud of you for trying again, even though last time was so horrible. That takes strength and bravery! I don't blame you for being nervous. I have a good feeling that it's going to go really well this time though. How have you been feeling with your tube feeds? Are your symptoms any better?

Trinity, welcome to the forum, but I'm so sorry that you have to be here. I can't believe that your doctor would say that you just have IBS. That is such a cop out, in my opinion. It sounds like you have way more going on. Your tests have even shown stuff! I actually did go to the Mayo Clinic, and although it wasn't helpful for me, I don't think it would be a bad idea for you to consider going. It was easy for me to get a referral. I don't have a diagnosis, and all my tests have basically come back normal. I just asked my GI for the referral, and he did it. I live in Alaska, so I had to travel there, but since you live close, it should be even easier for you. I'm 26 years old, so I understand what it's like to be (kind of) young and sick. I thought that I would be in such a different place at 26. But I'm unemployed, a graduate school drop out, and pretty soon I'll be living off my husband because I'm about to run out of my savings. It sucks seeing my friends doing fun stuff and chasing their dreams, when I'm stuck in bed or on the toilet. I cry all day long, every day, basically. I can't imagine having to take care of a kid while being sick. I can barely take care of my cats! You must be tough! I really hope you find answers soon. I know how frustrating and disheartening this all can be. But you can come here for advice or to just rant anytime!
 
I cannot wait to get the GES on Monday. My stomach is a mess today - I keep getting painful stomach cramps and I'm not sure why because I didn't eat anything out of the ordinary last night. I don't want to say that I am wishing it's gastroparesis, but I would like an answer as to why my stomach has iffy symptoms. The worst lately is cramping and nausea. :(
 
Thank you everyone for the good thoughts! I will keep you all updated.

Maya thank you, I can cope with some tummy pain just not what happened last time haha! I expect I will feel bad from the sedation so I'm going to ask for my IV antisickness and fluids to help (sedation and POTS are a bad mix). Thankfully the last NJ tube was the same 8fr that my NG is, it just had a bigger connector so wasn't as comfortable sleeping when I rolled onto it. But again I can live with that!

MissLeopard keep us updated on the GES, I will keep everything crossed for you. I totally understand wanting a diagnosis, it's so difficult living with something when you don't know what it is isn't it. I really hope the GES gives you an answer.

Akgirl thank you, it's good to hear from you again, I'm so sorry you've not been doing well. Are you any further forward with getting a diagnosis or treatment? The tube feeds so far have been okay, the gastroparesis seems to be steadily getting a little worse again so my pain has been increasing which sucks, but the feeds mean I've slowed my weight loss down so that's good and I put some on in my good spells then lose a little in my bad spells. I haven't noticed a difference in energy but with everything that's been going on that doesn't surprise me!
 
Thank you everyone for the good thoughts! I will keep you all updated.

Maya thank you, I can cope with some tummy pain just not what happened last time haha! I expect I will feel bad from the sedation so I'm going to ask for my IV antisickness and fluids to help (sedation and POTS are a bad mix). Thankfully the last NJ tube was the same 8fr that my NG is, it just had a bigger connector so wasn't as comfortable sleeping when I rolled onto it. But again I can live with that!

MissLeopard keep us updated on the GES, I will keep everything crossed for you. I totally understand wanting a diagnosis, it's so difficult living with something when you don't know what it is isn't it. I really hope the GES gives you an answer.

Akgirl thank you, it's good to hear from you again, I'm so sorry you've not been doing well. Are you any further forward with getting a diagnosis or treatment? The tube feeds so far have been okay, the gastroparesis seems to be steadily getting a little worse again so my pain has been increasing which sucks, but the feeds mean I've slowed my weight loss down so that's good and I put some on in my good spells then lose a little in my bad spells. I haven't noticed a difference in energy but with everything that's been going on that doesn't surprise me!

Thank you for your support. I'm really hopeful that the test will provide answers. I think I may request a repeat endoscopy because last year there was erythematous mucosa found but it was negative for h.pylori. Reddened tissue suggests inflammation and/or irritation which my former GI doctor did not explore further. He simply brushed it off and moved on. It sounds now like I had non-HP gastritis. If the GES is negative, this may be the cause of the problem or it may exacerbate it if it's positive. My current GI already impressed me because she didn't automatically assign a diagnosis without tests.
 
Hi MissLeopard,

I'm thinking this may be a better GI. I sure hope she manages to figure everything out. It's a good thing to be impressed with the current doc. I wish you the very best. This one sounds very promising.


Best wishes to you,

Chris
 
Hi MissLeopard,

I'm thinking this may be a better GI. I sure hope she manages to figure everything out. It's a good thing to be impressed with the current doc. I wish you the very best. This one sounds very promising.


Best wishes to you,

Chris

I could not agree more. I've only seen her one time and I'm already happy with how she approaches a diagnosis - she doesn't assign one without doing tests. She gave me some lab slips for stool samples which I completed today (very gross, but I did it) and I'll be dropping them off at the lab on the way to my GES. One of the slips was for fecal calprotectin. She also had me do a blood draw for a sedimentation rate which I means she is checking for inflammation. I saw my old lab work done by another doctor a few years ago in 2013 and it showed a high CRP - I may bring that to my next appointment to see what she thinks. A follow-up test was never done. Autoimmune disorders run in my family - both my paternal aunt and grandmother have rheumatoid arthritis. My aunt also has ankylosing spondylitis. I have Celiac disease. Where there is one autoimmune disorder, there is potential for more, so I'm wondering if I've got something else going on.
 
Hi MissLeopard,

I never would wish a disease upon anyone but if you do have one, I think it is very important to get the proper treatment. I'm both happy for you that you are having better luck with the new medical team and also hoping for the least serious diagnosis. Hang in there, it sounds like you are on the right track.

All the very best,

Chris
 
The GES was very easy. I got there early so I started earlier than planned and it was really nice. The same tech that did my HIDA scan last year was the one doing the GES, so it was nice to see her again. I ate a scrambled egg and drank some water and then stood in front of the camera. Every 30 min for 2 hours, I would be called back to the room and scanned again. I could feel the egg just sitting in my stomach, so I'm pretty sure the scan will be conclusive. My doctor will get the results in 24-48 hours. I also turned in the stool samples today on the way to the hospital, so that should come in soon. The sed rate was normal from Saturday - the doctor's office uploaded the result in the patient portal. I wish she asked for a CRP level, though.

In other news, my endocrinologist has tested my hormone levels twice because my DHEA is really high - the first was over 600 and the second almost 500. She is having me get an adrenal CT scan to rule out a virilizing adrenal tumor (most likely benign, but hormone secreting) as well as 2 saliva cortisol tests to rule out Cushing's. If the CT scan is positive, I may have to have surgery for the 3rd time in 12 months. :(
 
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I'm glad the GES went well MissLeopard, I hope it doesn't take too long for you to get the results from your doctor. I hope the CT goes okay and it doesn't mean another surgery for you!

I've had a call from the ward and it looks like I will be going in today then I guess my NJ placement will be tomorrow as they can't book it until I'm on the ward if that makes sense?

I had really bad D yesterday and took an imodium which obviously stopped everything and I can tell it has started t wear off so of course I'm worried it will choose the worst possible time to wear off completely, either on my way to the hospital or half way through the paperwork or something. I know it probably sounds daft but I don't want that happening while I'm in hospital again, I would rather be in the privacy of my own bathroom! I'm pretty sure it was only because I got overheated and spent time in the sun on Sunday (it always gives me awful D, no idea why) so I'm hoping it is effectively out of my system but you can never be sure can you. There's a lot of suspicious grumbling and bubbling and churning going on. At least I should have a few hours before I need to head to the hospital! Does anyone else find hot weather affects their bowels badly?!
 
I'm glad the GES went well MissLeopard, I hope it doesn't take too long for you to get the results from your doctor. I hope the CT goes okay and it doesn't mean another surgery for you!

I've had a call from the ward and it looks like I will be going in today then I guess my NJ placement will be tomorrow as they can't book it until I'm on the ward if that makes sense?

I had really bad D yesterday and took an imodium which obviously stopped everything and I can tell it has started t wear off so of course I'm worried it will choose the worst possible time to wear off completely, either on my way to the hospital or half way through the paperwork or something. I know it probably sounds daft but I don't want that happening while I'm in hospital again, I would rather be in the privacy of my own bathroom! I'm pretty sure it was only because I got overheated and spent time in the sun on Sunday (it always gives me awful D, no idea why) so I'm hoping it is effectively out of my system but you can never be sure can you. There's a lot of suspicious grumbling and bubbling and churning going on. At least I should have a few hours before I need to head to the hospital! Does anyone else find hot weather affects their bowels badly?!

It might be the Vitamin D stimulating your colon. I know, when I get too much sun, I have cramping and diarrhea, too. I just found this article:

https://www.livescience.com/38842-extreme-heat-may-aggravate-gastrointestinal-problems.html
 
Sarah, yes, hot and humid weather definitely gets my guts upset. And if I exert myself in hot & humid weather then I end up feeling horrible. I get awful cramps and lots of d. A couple of years ago I had to help out at a work event that was outdoors, it was hot and humid and I was running around doing a lot of physical activity, and I didn't drink enough water. I felt horrendous the following day! On warm days I need to stay indoors in the air conditioning and rest as much as I can.
 
Grrrr! I really want the results of my gastric emptying study to be posted! I may call them tomorrow and see if they have been received. They posted the blood work results, but I'm still awaiting the GES and stool sample cultures.
 
Hi!
Been reading trough the forum for a couple of days now, and made my first post today to tell my story so far (you can read it HERE if you are interested) but I'm in the same boat as you are, have no diagnosis as of now, and waiting for some more tests and results at the moment.

Wishing you all the best
 
MissLeopard I hope they don't take too long to grt back to yo with your GES result, let us know how you get on with it!

I had my NJ tube placed today! I've literally just started feeds up at 35ml an hour so we will see how that goes, if last time is anything to go buy it won't be until tomorrow that I find out if my body has a problem with them. Saying that so far I've not had any of the problems I had already had by this point last time so that's reassuring. Just about to get another dose of IV ondansetron/Zofran then it will be bed time for me, although my fluids will finish in a couple of hours and no doubt wake me up haha.
 
MissLeopard I hope they don't take too long to grt back to yo with your GES result, let us know how you get on with it!

I had my NJ tube placed today! I've literally just started feeds up at 35ml an hour so we will see how that goes, if last time is anything to go buy it won't be until tomorrow that I find out if my body has a problem with them. Saying that so far I've not had any of the problems I had already had by this point last time so that's reassuring. Just about to get another dose of IV ondansetron/Zofran then it will be bed time for me, although my fluids will finish in a couple of hours and no doubt wake me up haha.

I called them today and the girl said it usually takes 7-10 days for results! The guy at the imaging center said it takes 24-48 hours for reading, so why does it take so long for the doctor's office to get them to me? Ugh! I've been experiencing more nausea the last few days and I'm tired of it. :(
 
Miss leopard
The ordering doctor and the radiology reading the GES
Have to go over the test results prior to a report being issued
once they discussed the results then the official report is issued
This is why they get 7-10 days to get together and talk

If you looked at the camera screen during the GES
It would should glowing pixels
With a clear stomach area in the beginning of the scan
You could watch the pixels slowly leave the stomach

Ds scan was done but we had to wait almost two weeks for the GI to decide what to do :(
That was almost two years ago and ees is amazing for letting him eat again

Some start with just diet
Many small low fat low fiber meals 6-8 per day
Ds only eats 200-300 calories at his big meals
But he supplements with formula since his liquid emptying is normal


Hope they have answers soon
 
Miss leopard
The ordering doctor and the radiology reading the GES
Have to go over the test results prior to a report being issued
once they discussed the results then the official report is issued
This is why they get 7-10 days to get together and talk

If you looked at the camera screen during the GES
It would should glowing pixels
With a clear stomach area in the beginning of the scan
You could watch the pixels slowly leave the stomach

Ds scan was done but we had to wait almost two weeks for the GI to decide what to do :(
That was almost two years ago and ees is amazing for letting him eat again

Some start with just diet
Many small low fat low fiber meals 6-8 per day
Ds only eats 200-300 calories at his big meals
But he supplements with formula since his liquid emptying is normal


Hope they have answers soon

The tech had the screen turned away from the scanner, so I was unable to see the picture. I'm pretty sure it was positive, though, because the egg just felt like a brick sitting in my stomach - it wasn't moving. I'm trying to refrain from eating large meals, especially at night because I feel so nauseous and bloated in the morning from food just sitting in my stomach. Last night, I ate light and felt a little bit better this morning, so it may work. I've noticed I can't handle popcorn very well - too much fiber and it causes stomach pain. Both nights I ate it, I had horrible stomach cramps. :(

Anyway, I just hope this test is conclusive. I have been having YEARS of stomach/digestive issues and never knew the cause. Celiac disease was definitely my problem and gluten-free has made a huge difference, but it didn't get rid of everything.
 
We also avoid fiber and high fat things. Definitely no popcorn but that is also because my daughter has Crohn's.

We started with meds and but also changed my daughter's diet at the same time. Small meals - four a day. She also used to get formula at night through her tube because she was just unable to eat enough to keep her weight up but recently stopped that (though we may need to restart soon).

She tolerates veggies best in soups. We stick with lean protein - lots of chicken and fish and turkey and very little red meat.

We started with Bethanechol and then tried Erythromycin and then switched to Domperidone. My daughter was very severely underweight and also really needed the feeding tube.

She can eat about 300 calories at a time, no more or it causes extreme nausea. She also takes Zofran but we try to minimize using it.

We heard about the gastric emptying study after a few days, but it varies based on the hospital. I would look at the GP diet guidelines while you are waiting.
 
http://gastroparesisclinic.org/treatments.php?pageId=1186&moduleId=204


This explains diet a lot
No skins
Mushy fruits /veggies
Next to no fiber (more than 1g is dslimit )

Some docs make you try dietfirst
We had to try it and then combine it with meds

I may try and experiment with my diet to see which causes problems and which doesn't. I've noticed protein really seems to work well - I did well on a ketogenic diet (both in terms of digestion and weight loss). I'm kind of the atypical GP patient in that I'm overweight, not underweight. My endocrinologist thinks I may have either an adrenal tumor and/or Cushing's and is doing further tests to rule both out and both cause weight gain. I have a BMI over 30 and I'm only 5'3". My OB/Gyn kept putting me on birth control for ovarian cysts (he diagnosed PCOS) but the endocrinologist thinks that may have caused additional problems with my hormones. I should get answers within the next week or two about lab results. She also wants an adrenal CT scan to look for tumors.
 
My daughter was just diagnosed with Cushings but from steroid use. The treatment is very different if you have a tumor (surgery usually). Her symptoms were a very puffy face, weight gain and purple stretch marks.

In her case, we just have to avoid steroids and wait for symptoms to go away. She is already losing weight.

The other thing to remember is that if you have been on steroids, birth control makes them more potent and can cause more steroid related side effects.
 
My daughter was just diagnosed with Cushings but from steroid use. The treatment is very different if you have a tumor (surgery usually). Her symptoms were a very puffy face, weight gain and purple stretch marks.

In her case, we just have to avoid steroids and wait for symptoms to go away. She is already losing weight.

The other thing to remember is that if you have been on steroids, birth control makes them more potent and can cause more steroid related side effects.

I was on steroids multiple times due to asthma - both Advair and Prednisone. I now take Singular, which controls it pretty well. The ironic thing was that I asked my former internist if I could have it because I was studying Concepts of Disease and one of our lectures was on it - she was adamant that I did not but did not do any lab work. I have many of the classic symptoms:

-central weight gain with thinner limbs
-round red face
-buffalo hump
-thin skin that bruises easily
-hirsuitism (which is also caused by PCOS and excess DHEA - both of which I have)
-dry, brittle hair that falls out
-depression and anxiety with irritability
-High cholesterol

I've even read that excess cortisol can cause GI disorders. I'm doing the last saliva cortisol test tonight and then my mom will drop them off at the lab for me tomorrow.
 
Advair is in inhaled corticosteroids (ics)
They do not have the same side effects as oral systemic steriods
5 days of oral steriods is equivalent to 5-7 years of daily ICS.

Surprised you switch from advair to singulair
If you needed oral steroids
The goal of asthma meds is to keep oral steriods /ER visits to only once a year
And then step down therapy slowly
Advair is a combo med of ics and long acting broncodialator (similar to albuterol but longer )
Most have to step down to qvar or Flovent
Since advair is as high as you can go
And singulair by itself is as low as you can go but typically recommended. For those under age 4
Over 4 tends to stay on ics even if it's just once a day

https://www.nhlbi.nih.gov/health-pro/guidelines/current/asthma-guidelines/summary-report-2007

Guidelines here
 
Advair is in inhaled corticosteroids (ics)
They do not have the same side effects as oral systemic steriods
5 days of oral steriods is equivalent to 5-7 years of daily ICS.

Surprised you switch from advair to singulair
If you needed oral steroids
The goal of asthma meds is to keep oral steriods /ER visits to only once a year
And then step down therapy slowly
Advair is a combo med of ics and long acting broncodialator (similar to albuterol but longer )
Most have to step down to qvar or Flovent
Since advair is as high as you can go
And singulair by itself is as low as you can go but typically recommended. For those under age 4
Over 4 tends to stay on ics even if it's just once a day

https://www.nhlbi.nih.gov/health-pro/guidelines/current/asthma-guidelines/summary-report-2007

Guidelines here

I was able to switch because my asthma is not out-of-control anymore. I get mild attacks from allergies. It seems to have gotten better either because of age or getting off gluten, since I have Celiac as well as an actual allergy to wheat and gluten. I react to even the smallest amount. Once getting off it, many problems cleared up.
 
Just to clarify, Singulair is NOT steroids. It is a leukotriene modifier and helps stop acute asthma attacks before they start. I still carry a rescue inhaler for the rare times I still need to use it, but I don't use it very often at all. It often expires before the doses run out. :)
 
Glad you were able to step down therapy
Hopefully your pulmanologist was able to give you an asthma action plan as well
For the three asthmatics in our family per their individual asthma action plans
Use of a rescue inhaler more than twice within a week(excluding colds or exercise)we are to call the doc right away to make sure things are still under control

As you have we have gone up and down the ladder at various times for therapy

Always good when you can lower meds and maintain:)
 
In the best possible way I'm glad it's not just me who finds hot weather a problem digestive system wise!

So I thought I would pop on with a quick update, I was admitted Tuesday, had my NJ placed on Thursday and started feeds that night, I'm now home having had a full 20 hour feed and have not long set up my next feed after my four hour break. I really don't want to jinx it but so far so good mostly! A different sedative was used for the procedure and other than sleeping for three hours I felt okay after just the usual dizzy/lightheaded feeling and some nausea. Having the IV meds first and IV fluids after really helped!
Feeds so far haven't given me any diarrhoea but I think the amount of ondansetron and buscopan I've been taking has actually constipated me slightly so that might not be so fun over the weekend. But nothing like last time and I've had a full 20 hour feed so that's a relief!
I've had some cramping and pain so far, I'm only on 35ml an hour then going up 10mls every couple of days until I find a point I can tolerate up to. But it's been bearable.
I'm still quite nauseous but I kind of expected that as I sometimes even have nausea with a completely empty stomach. I haven't felt as full and bloated though which is a bonus! The only slightly weird thing is sometimes I swear I can taste the feed which is really weird. My tube is in 130cm and put in via endoscopy so it's definitely in the right place so I'm not sure why that is though.
Obviously it's still very early days but so far this NJ has been better than the last which is a relief :)
 
Good luck Sarah. I hope things are getting better for the long term.

Regarding the heat, we are having a possible record setting heatwave over the weekend. 7-10am are my outside hours for the near future. 35-37c are expected....Yikes, I'm in remission but still can't tolerate the heat that I used to love. Weird or what?
 
Thankfully it's cooled down here now and it's been below 20c all day the last couple of days! I hope you are doing okay in the heat and it's not affecting you too badly.

Tonight is my first feed rate increase so I will see how that goes and hopefully by the end of next week I will be at a good rate so I get a bigger break in between feeds
 
Thanks Sarah,

I hope you are doing okay as well. I'm trying to stay within the air conditioners reach during the afternoons. I'm glad it cooled off a bit in your region. Best of luck with your rate increase. I hope all goes well, keep in touch. :)


Best regards,

Chris
 
Tonight is my first feed rate increase so I will see how that goes and hopefully by the end of next week I will be at a good rate so I get a bigger break in between feeds

So glad it's going well this time Sarah!! Are you home yet? We did continuous feeds when my daughter had the NJ tube. She had to get 2400 calories to gain weight and could eat about 400-600 of those. So she had the feed going for 18-20 hours. We started at 10 mL/hr and went up by 10 mL every 4 hours - eventually got to 100 mL/hr which she tolerated well.

You probably need fewer calories (she was a teenager), so hopefully you can get the rate up some more and spend less time hooked up to the pump. Don't go too fast though - the docs can give you a guideline about increasing it.

Hang in there!!
 
Maya yes I'm home which is good! Came home on Friday. I was a little concerned they're not monitoring refeeding bloods but I got a ****** doctor this admission, she didn't listen to the dieticians at all. I've felt a bit dodgy all weekend, I think it's a mix of low blood pressure, low blood sugar and my POTS but I did worry it could be a bit of refeeding to be honest. So taking it very easy!

I'm on 1500 calories from my feed then need to make it up to 1800 from food/a supplement drink for weight gain based on my height/weight/activity level. At the moment I'm on 50ml an hour but obviously increasing over the week, they want me to do it super slow with being at home. I think we are aiming for 80-100ml an hour :)

I'm going to see my GP about my blood sugars next week as I'm having trouble with lows which is frustrating, I seem to wake up with low blood sugar even though I'm on feed all night which is odd!
 
Sarah, I'm so glad everything seems to be going much more smoothly for you this time! That's definitely a relief. I remember when you first started inquiring about tube feeds, and look at all the progress you've made so far. Hopefully it's all up from here! :)

Does anyone else feel worse after they have a bowel movement? I go a lot, up to 8 times a day, and I almost always feel worse after I go. I'm not sure what that means but it's not fun. I actually appreciate the rare day when I don't go at all. I think I've had enough bowel movements the past 3 1/2 years to last me like 20 years. Unfortunately that's not how it works.....

Also, is anyone here on medications for anxiety or depression? I've been taking Ativan for a few years as needed, and I've tried several different antidepressants and anxiety medications to see if they would help with my digestive issues. None of them did. But now I've developed pretty severe anxiety, to the point where I can't drive because I panic every time I do. The weird thing is that I swear I can feel the anxiety stemming from my stomach. Like my stomach is causing it. I don't even really know how to describe it. Anyway, my doctor prescribed me Lexapro to see if it'll help with my panic/anxiety symptoms. I've been too afraid to try it yet (anxiety about trying something for anxiety.....), but I'm thinking I probably should give it a shot. I just know my body and I know that medications usually make me worse instead of better. And I really don't need any more issues!
 
Akgirl thank you, some days it doesn't feel like I'm making any progress but when you put it like that I guess actually I've made some big steps. I technically have a diagnosis and we've sort of started treatment (more management really) and I'm actually getting nutrition! It's a huge relief actually. Also I have no experience with anxiety and depression medications but I do get anxious about starting new medications too, in fact I've been putting off starting one for about 6 months haha. But I'm going to give it a go next week! I just want to give my NJ a bit longer to settle. But yeah I just get anxious about possible side effects which is stupid really, the more anxious I am I swear the more I feel the side effects!
 
Unfortunately, I still haven't gotten my test results from the GES or stool studies. :(

I tried calling the GI clinic, but the girl who answered the phone was most unhelpful and didn't even offer to transfer me to my doctor's nurse. I've been checking the patient portal every day (sometimes multiple times) and haven't seen them. I've also been checking the lab's patient portal and they have only posted the bloodwork I had done. How long does it usually take for stool studies and cultures (including parasites, c.diff, fecal cal)?
 
Usually they don't even call me unless it's bad news. So for me no news is usually good news. I hope it is the same for you.

I read her online reviews and think I may have gotten the short end of the stick, provider wise. I went to her on the advice of a friend, but the doctor doesn't seem to be very accessible when you want to ask a question. I called the office again today and asked to speak to either the nurse or the PA and the girl asked me a series of questions and was typing out a message. I've sent 2 messages thru the patient portal and neither was answered. I also didn't hear back from them today - hopefully, tomorrow.

It's frustrating because my former GI - the bad one - would let you talk to the nurse when you needed to. They are in the same group but different locations. My f/u appointment isn't until July 10th (it was scheduled at the office after my appointment earlier this month for my birthday but I used their portal to find an earlier date). I just hope I don't have to wait until then to get the results...
 
I hope not too. I used to have a great doctor and then he grew his practice so much it was almost impossible to see him. It was very frustrating. My current GP is up to speed with GI issues as his wife has IBD. He has promised me he will close his practice before things get out of hand like the last one. I hope things get sorted out for you soon. It is so hard to deal with not knowing your results and on the same hand knowing that something is wrong with you and needs to be addressed.
 
I read her online reviews and think I may have gotten the short end of the stick, provider wise. I went to her on the advice of a friend, but the doctor doesn't seem to be very accessible when you want to ask a question. I called the office again today and asked to speak to either the nurse or the PA and the girl asked me a series of questions and was typing out a message. I've sent 2 messages thru the patient portal and neither was answered. I also didn't hear back from them today - hopefully, tomorrow.

It's frustrating because my former GI - the bad one - would let you talk to the nurse when you needed to. They are in the same group but different locations. My f/u appointment isn't until July 10th (it was scheduled at the office after my appointment earlier this month for my birthday but I used their portal to find an earlier date). I just hope I don't have to wait until then to get the results...
Hope you get answers soon
 
I just got an email that the lab results were available for viewing thru the lab portal. Went there and everything is normal except for the C.diff.! Fecal cal is in normal range, below 15.6. No ova&parasites, no food poisoning still lingering in my system from April, etc. Now, I'm just awaiting the results of the Gastric Emptying Study. I'm pretty sure it will be positive for gastroparesis. I have been doing some experimenting and I'm realizing that by sticking to the dietary guidelines for gastroparesis, I'm not experiencing nausea or upset stomach. Yesterday, I went off it and my stomach HURT. I ate black bean chili and YUCK! Stomach pain and urgent need to use the bathroom multiple times yesterday. I think chili is a no-go and it has too much fiber. The interesting thing is that I did not eat the chili with corn chips (I think I have a corn allergy) and still felt yucky! I ate the new Siete Lime Grain-Free tortilla chips and, somehow, my stomach was still torn up. :(

The GDH antigen WAS detected. They are sending it for further study...
 
In the past, our CDiff results have said "negative" or "positive" - and that's it.

Here is what I found:
Common antigen (common enzyme or GDH) test

This assay detects the presence of the enzyme, glutamate dehydrogenase (GDH), which is produced by all C. difficile organisms. GDH is also produced by other bacteria. All positive antigen results must be combined with a toxin test to confirm the presence of C. difficile toxin.

Hope you hear from the GI soon about the Gastric Emptying Test. I don't know what the guidelines are for a 2 hour test but for 4 hours, if more than 10% of the meal is left in your stomach, you have Gastroparesis.
 
TABLE 2
Time point Upper limit (a greater value suggests abnormally delayed gastric emptying)
1.0 h 90%
2.0 h 60%
3.0 h 30%
4.0 h 10%

So it looks like you would need to have over 60% of the meal left in your stomach at two hours.
 
In the past, our CDiff results have said "negative" or "positive" - and that's it.

Here is what I found:


Hope you hear from the GI soon about the Gastric Emptying Test. I don't know what the guidelines are for a 2 hour test but for 4 hours, if more than 10% of the meal is left in your stomach, you have Gastroparesis.

I had two separate c.diff. tests ordered -

CLOSTRIDIUM DIFFICILE TOXIN/GDH W/REFL TO PCR (GDH detected)

CLOSTRIDIUM DIFFICILE TOXINB,QL REAL TIME PCR (not detected)

I found this information thru a hospital website:

If you have a GDH positive result, this means that your large
bowel is colonised with Clostridium difficile bacteria but that you
do not have the infection.

This is confirmed by the second stage of testing showing that
you do not have the toxins A and B and this means that you do
not have Clostridium difficile infection but that you carry the
Clostridium difficile bacteria (germ) in your bowel.

Clostridium difficile are bacteria (germs) which can be present
as part of the ‘normal’ bacteria in the bowel of up to 3% of
healthy adults.

So, I guess like MRSA, you can be colonized but not in active infection. I hope the PA or nurse calls me back tomorrow so I can see what I need to do. I work in a healthcare environment with the elderly (indirect contact; I work in admin).
 
TABLE 2
Time point Upper limit (a greater value suggests abnormally delayed gastric emptying)
1.0 h 90%
2.0 h 60%
3.0 h 30%
4.0 h 10%

So it looks like you would need to have over 60% of the meal left in your stomach at two hours.

That helps. Thanks. I wouldn't doubt that I had at least that much in my stomach at the end of the test. I felt like I had a brick sitting in my stomach and nothing was moving. :(
 
It looks like, regardless of whether the toxin test was positive or negative, most official websites say that providers should discontinue any antibiotics currently in use (not on any) and start the patient on oral Flagyl or Vancomycin to rid the colon of any c.diff. Since I have GI symptoms, most of the websites also say that the toxin levels may not be at a detectable level but I may still be infected - it's not a perfect test so the provider should treat it like it's active. :(
 
As far as why Siete chips bother you
They are made from almond flour
If you have Gastroparesis then highly dense (high fiber )almond flour would be a big NO
we tried when Ds was grain free and found almond flour caused lots of stomach issues due to density
Had to stick with lighter gf flours like rice or potato starch

Good luck on the GES results and fingers crossed no c diff
 
As far as why Siete chips bother you
They are made from almond flour
If you have Gastroparesis then highly dense (high fiber )almond flour would be a big NO
we tried when Ds was grain free and found almond flour caused lots of stomach issues due to density
Had to stick with lighter gf flours like rice or potato starch

Good luck on the GES results and fingers crossed no c diff

Yikes! Did not know that and I just bought a bag of Bob's Red Mill Almond Flour to make recipes with. :(

I just made up my mind to call/email my GP in the event that I don't hear from the GI clinic tomorrow. I need a professional to interpret the lab results and tell me if I need to be on Flagyl or Vancomycin (obviously, I would need someone to prescribe it, too).
 
We used the flour blend -homemade from King Arthur flour
Mixing white rice flour ,potato and tapioca starch and subbed it into the against the grain gourmet recipes for her buckwheat flour
I could use 1/4 almond flour but the rest had to be lighter flours
Using pumpkin purée worked well for light muffins or breads

Hope the Gp can help
 
I had two separate c.diff. tests ordered -

CLOSTRIDIUM DIFFICILE TOXIN/GDH W/REFL TO PCR (GDH detected)

CLOSTRIDIUM DIFFICILE TOXINB,QL REAL TIME PCR (not detected)

So based on what I know from my daughter having CDiff twice, you have to have the toxin to be positive. I don't think you would have to be treated but definitely check (I'm not a doctor!!).

Also, for what it's worth, generally if you do have CDiff, the doctor will call as soon as they get the results. The first time my daughter was positive, we got the call the same day we dropped off the stool sample. They immediately started her on Vancomycin.

If you do not have IBD, they generally start with Flagyl if you have CDiff.

Good luck!
 
I have to say I'm amazed by the system you guys have!
Getting results sounds so much easier and quicker than here. Here any results go to the doctor who ordered the test then you get them when you next see the doctor! Some things it's a little different, for example my mum has regular blood tests while on methotrexate and if anything is off the rheumatology nurse calls her then speaks to the doctor to decide what to do.
But my GES was done outpatient and had I not been admitted a few days later I would have had to wait until my follow up appointment 6 weeks later for the result.
I hope you get your result soon though it must be so frustrating!
 
Hi all,
Firstly I am not diagnosed but really wanted some insight into the possibility of IBD after a recent upper endoscopy. My GP had arranged this procedure due to my problems with long standing acid reflux and upper abdominal fullness and pain.

Although this was the reason for my endoscopy yesterday I have had years of intermittent and unpredictable diarrhoea and tummy cramps. This had been put down to IBS after an upper and lower endoscopy 4 years ago showed nothing.

So the GI consultant saw me after the procedure yesterday and told me my gullet seemed fine but he was surprised to see some apthous ulcers in my duodenum. In his report he wrote 'ulcerated localised mucosa' and 'erosions x3 apthous type'
He had done an H pilori test which was negative and previously been negative. He asked me if I used anti-inflammatories much (I don't) as apparently this is the other main cause of erosive duodenitus.

He has taken biopsies and talked of doing a colonoscopy and a scan ??? To check for more of these ulcers. In the procedure comments he has written possible IBD awaiting pathology.

could I please have some thoughts on this ? Are these findings really suggestive of IBD ? And what would the pathologist be looking for in the biopsies ?
Many thanks in advance folks. X
 
I ended up calling medical records in the radiology department to request a CD copy of the gastric emptying study I had on the 19th.

ETA: I just got a call from the PA-C and she said that the GES was marked "normal." I also asked about the lab results - about the antigen being positive - but she said the reflex testing was negative so I do not have the infection (good news). I'm still not closer to getting a diagnosis. I asked if they had anything sooner than the 10th and she said they had an appointment available on the 3rd so I'm going to go then. It's a week sooner, which is better, but I am just VERY frustrated that no one has been able to figure out my symptoms thus far. :(
 
Last edited:
It just popped into my head that it may be my high hormone levels! I was just tested for cortisol levels after I had 2 very high DHEA results. Apparently, it can cause all kinds of gut problems. I haven't gotten the lab results back yet, but it does make me wonder...
 
Hi all,
Firstly I am not diagnosed but really wanted some insight into the possibility of IBD after a recent upper endoscopy. My GP had arranged this procedure due to my problems with long standing acid reflux and upper abdominal fullness and pain.

Although this was the reason for my endoscopy yesterday I have had years of intermittent and unpredictable diarrhoea and tummy cramps. This had been put down to IBS after an upper and lower endoscopy 4 years ago showed nothing.

So the GI consultant saw me after the procedure yesterday and told me my gullet seemed fine but he was surprised to see some apthous ulcers in my duodenum. In his report he wrote 'ulcerated localised mucosa' and 'erosions x3 apthous type'
He had done an H pilori test which was negative and previously been negative. He asked me if I used anti-inflammatories much (I don't) as apparently this is the other main cause of erosive duodenitus.

He has taken biopsies and talked of doing a colonoscopy and a scan ??? To check for more of these ulcers. In the procedure comments he has written possible IBD awaiting pathology.

could I please have some thoughts on this ? Are these findings really suggestive of IBD ? And what would the pathologist be looking for in the biopsies ?
Many thanks in advance folks. X

Hi Pinkpoppy,


I'm not sure what all they may be looking for but I do know crohn's can show up anywhere from your mouth to your rear end. It could be IBD but I sure hope not. There are other things that can cause ulcerations such as acid reflux or even maybe an allergic reaction?

Welcome and best of luck. Be sure to let us know what you find out.
 
I ended up calling medical records in the radiology department to request a CD copy of the gastric emptying study I had on the 19th.

ETA: I just got a call from the PA-C and she said that the GES was marked "normal." I also asked about the lab results - about the antigen being positive - but she said the reflex testing was negative so I do not have the infection (good news). I'm still not closer to getting a diagnosis. I asked if they had anything sooner than the 10th and she said they had an appointment available on the 3rd so I'm going to go then. It's a week sooner, which is better, but I am just VERY frustrated that no one has been able to figure out my symptoms thus far. :(

Thank goodness you got some good news. You must be somewhat relieved. I totally understand the frustration of not knowing. I'm thinking of you my friend.
 
ETA: I just got a call from the PA-C and she said that the GES was marked "normal." I also asked about the lab results - about the antigen being positive - but she said the reflex testing was negative so I do not have the infection (good news). I'm still not closer to getting a diagnosis. I asked if they had anything sooner than the 10th and she said they had an appointment available on the 3rd so I'm going to go then. It's a week sooner, which is better, but I am just VERY frustrated that no one has been able to figure out my symptoms thus far.

Sorry to hear you didn't get a diagnosis. Bad reflux can feel a lot like Gastroparesis - have you tried a PPI? I would also ask to see the GES report yourself, even just for peace of mind.
 
MissLeopard I'm sorry you didn't get the result you were expecting. It could be worth asking for the specific timings and percentages just for peace of mind too.
It probably sounds silly but for me knowing my emptying time from the GES versus the normal limit really helped :)

Maya with your daughters gastroparesis does she have any problems with low blood sugar? I had some lows while in hospital and off my feed so I know what they feel like but even after being on feed all night I keep waking up feeling like I have low blood sugars. I don't have a tester so I'm not certain (waiting to see my GP to see if we need to monitor them) but that's how it feels and the last few mornings I've had a glucose tablet first thing and it makes me feel loads better! I've heard gastroparesis can cause some blood sugar issues but I wasn't sure if it is normal and I also feel like surely it shouldn't happen while I'm on feed all night? Don't worry if you don't have any insight, I'm seeing my GP next week about it I'm just curious!
 
I have to say I'm amazed by the system you guys have!
Getting results sounds so much easier and quicker than here.

Sarah, the system here does have its benefits. Most doctors here have an online system where you can log in, check test results, send a message to your doctor, etc. It's quite convenient. But, of course, we pay a lot of money for such convenience. I just sent in $1100 to pay off the last of my medical debt from last year. And that's with insurance. I had my medical debt paid off for a whole 3 days, then I got a notice from my insurance company that they're sending me a $200 bill for my GI appointment in May. I'm basically always going to be in medical debt, it seems. So yes, we have some cushy perks, but we also pay through the nose for it. I'd be much happier with universal single-payer coverage like the NHS. I know there would be longer waits and less perks, but so many people in this country go into bankruptcy because of medical debt. It's horrible. And now that awful orange man wants to punish us even more just for having pre-existing conditions. Ugh.

I have a friend who is a nursing assistant in a hospital, and he told me that they did some number crunching recently at his hospital. They came up with approximately $6,000 per day is the current average cost for a hospital stay - and that's with zero tests, meds, treatments, etc factored in. That's just for the hospital stay. So you can see how quickly someone could get into big financial trouble if they have a health issue and don't have insurance or have not so great insurance, or simply can't pay their deductibles and out of pocket costs. It's absolutely insane. So yeah, we have some conveniences for sure, but our system is not a good one by any means (in my opinion anyway). :(
 
MissLeopard, I'm glad you got your test results, but I completely understand your frustration about not having a diagnosis. You'd think with all the technology today, it wouldn't be so hard to figure out what's wrong with people. All my friends and family members who know about me being sick think I have crohn's. I even talked to my dentist about my illness (and sent her info about all my symptoms and everything I've tried so far......she wanted to help), and she did her own research and came to the conclusion that I have crohn's. Unfortunately all my tests for it are negative, so at this point I'm just kind of stuck. And since I'm not really doing any treatment right now, I just keep getting worse. Which also makes sense if I have crohn's.....
Sorry I didn't mean to ramble on about myself! I just wanted to say that I totally understand. It's SO frustrating. It sounds like you should try to stick to the diet of gastroparesis and see if it continues to help with your symptoms though. We all know that tests are not always accurate. If something helps, then that's all that really matters.

Cat, I completely agree about our healthcare system. A lot of people can't even go to the doctor because of how expensive it is. Even with insurance, the cost is often ridiculous. I don't even like to think about how much money I've spent over the last few years on health stuff, because it'll make me cry! And now I'm unable to work so I'm feeling pretty broke at this point. Something with our healthcare system definitely needs to change.

Cmack, you're the best because you're always so encouraging and supportive of everyone on here! And you don't even complain about your own problems. I just wanted to say that I'm glad you're here!
 

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