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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
 
my little penguin said:
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
Click to expand...

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.
 
my little penguin said:
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
Click to expand...

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.
 
Maya142 said:
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.
Click to expand...

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
 
my little penguin said:
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
Click to expand...

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
Click to expand...

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 shitty 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)?
 
cmack said:
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.
Click to expand...

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.
 
MissLeopard83 said:
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...
Click to expand...
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.
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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.
 
Maya142 said:
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.
Click to expand...

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.
Click to expand...

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).
 
Maya142 said:
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.
Click to expand...

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
 
my little penguin said:
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
Click to expand...

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)
Click to expand...

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...
 
Pinkpoppy said:
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
Click to expand...

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.
 
MissLeopard83 said:
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. :(
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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.
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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!
 
sarahfh said:
I have to say I'm amazed by the system you guys have!
Getting results sounds so much easier and quicker than here.
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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!
 
Oh don't get me wrong I am beyond grateful for our NHS and I literally would have died without it! I guess I just get frustrated sometimes with how long everything takes sometimes.

I seem to have a stomach bug/gastroenteritis again :( I'm honestly such a mix of angry and upset. I feel bad, I've been back and forth to the toilet all day with just watery BM's and now I have some cramps too. As always I'm nauseous but I'm not sure whether it's usual or bug nausea. I took my feed off a couple of hours ago to see if that would help but so far it's not. I just don't understand how I could have picked something up! I barely go out, I always wash my hands when I get back to the house, I always wash my hands after going to the toilet, I wash them before I eat usually (sometimes I forget) and after doing things like cleaning/litter trays/even washing up! I wash my hands before doing my tube stuff, I sterilise the bottles I put my cooled boiled water in, I don't keep the water any longer than recommended and mostly have it less time, I sterilise my syringe between each use and change it every day, I use the alcohol wipes on the end before I flush it. I just don't get it how have I picked something up?! :(
 
akgirl said:
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.
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I will definitely try to modify my diet. I've noticed a huge difference when I eat according to GP needs, so maybe I should see if it makes a difference in the long run.

I also decided to cancel the follow-up I had with the last GI doctor I saw. I was not happy with the office in general and thought it was incredibly hard to get a hold of someone. I ended up making an appointment with another GI doctor in the same group which I hope will be much better. The last GI got REALLY poor reviews online about poor care and follow-thru, so I'm not the only one (I saw her because my friend told me she had seen her, but I later found out it was only 1 or 2 times). This new GI gets much better reviews and she deals with Women's Health, IBD (specifically Crohn's), and IBS. Sounds like a much better fit overall. I see her for the first time on July 20th at 3:30pm. I'm hoping she will be much more open to figuring out my symptoms than the first GI I had - I couldn't stand him - and much more accessible than the 2nd. I'm going to ask her at our meeting what the best way to get a hold of her is if I have questions. :)
 
I seem to have a stomach bug/gastroenteritis again I'm honestly such a mix of angry and upset. I feel bad, I've been back and forth to the toilet all day with just watery BM's and now I have some cramps too. As always I'm nauseous but I'm not sure whether it's usual or bug nausea. I took my feed off a couple of hours ago to see if that would help but so far it's not. I just don't understand how I could have picked something up! I barely go out, I always wash my hands when I get back to the house, I always wash my hands after going to the toilet, I wash them before I eat usually (sometimes I forget) and after doing things like cleaning/litter trays/even washing up! I wash my hands before doing my tube stuff, I sterilise the bottles I put my cooled boiled water in, I don't keep the water any longer than recommended and mostly have it less time, I sterilise my syringe between each use and change it every day, I use the alcohol wipes on the end before I flush it. I just don't get it how have I picked something up?!
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Sarah, honestly, you could have picked it up from anywhere. Washing your hands is the best defense but of course, it's not fail proof. You may have touched something and touched your mouth without washing your hands. And since you were in the hospital...that could easily be where you picked something up.

Just wanted we do not do even half of what you do for the tube! The stomach isn't sterile, so we were told there is no need to sterilize anything!

We wash syringes with soap and water and that's it! We would also wash bags with soap and water but we get one per day now, so we don't have to.

We don't flush with boiled water, just drinking water. We definitely do not use alcohol swabs before connecting an extension to my daughter's tube.

So far so good! No tummy bugs or anything like that. Obviously, you should do what your hospital/nurse taught you to do, but remember that the stomach is definitely not sterile (neither is the jejunum) so you don't have to worry too much.

As for the blood sugar issues - we haven't had them. I thought they were more of a problem for diabetic patients with Gastroparesis (people with diabetes often get Gastroparesis). I would check with your nurse or GI.

Hang in there!!
 
Feel better soon Sarah. You have been extremely careful. Maya is right that nothing is fail proof and the hospital is full of yuck. Hopefully this bug will soon go away. Keep in touch.
 
cmack said:
Good luck with the new doctor MissLeopard. I hope this is the one for you. :)
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I appreciate it. I'm very hopeful that this could be the last GI doctor change. It's upsetting when you trust someone for your care and they don't show the level of concern you are looking for. I really thought this last one could be it because she was willing to test for gastroparesis and stool studies, but, after talking to my friend who saw her first, it appears that she orders test after test for the money, not necessarily for the patient's benefit. My friend was given several lab slips and the doctor didn't thoroughly explain the need for each one. If my friend completes all of them, she'll be at least $1,000 due in bills. Then, the office gave her a follow-up appointment for the very end of the following month and she was told she wouldn't get the results until the follow-up which is unacceptable. I'm moving on. I do not want to be with a doctor who cares very little in getting results back to the patient because she is booked solid. For people like me and my friend, our medical problems cause anxiety and the anxiety is only worsened when we have to wait so long to figure out what's going on. :(
 
Thank you, hoping today will be a better day! The only other thing I can think of is that it was from putting my feed rate up but I only put it up 5ml an hour so I don't see how it could cause that much of a problem.

Ahh okay, when I had my NG they said tap water to flush but still sterilise the syringes but no alcohol wipes, but with the NJ they said to use cooled boiled water and sterilise the container if possible then use the alcohol wipes before each flush. Isn't it weird how procedure varies! Even over here it seems to vary place to place. I was told it's because there isn't the acid in the jejunum to kill bacteria like in the stomach so to be extra careful.

I've been tested for diabetes 5 or 6 times now, it always comes back fine, I just seem to get low blood sugar some times for some reason. I'm seeing my family doctor about it next week I was just curious. Mostly it's only when I'm off feeds for whatever reason but even on feeds I've woken up a few mornings feeling like it was low. I've never had a high blood sugar reading though!
 
I finally got an appointment to get an abdominal CT scan thru my endocrinologist who believes I may have a functioning, hormone-secreting tumor on my adrenal gland because my DHEA has measured severely high twice. I am still awaiting the results of the saliva cortisol tests. Unfortunately, I have to drink a bottle of barium 1 hour before the scan which got me thinking about the similar scan I had last year initiated by the GI I was seeing - a week later, I was in the ER with sharp back pain. The radiologist noted 2 cysts on/around my kidney region and noted they were of little/no significance back then. Now, my endocrinologist suspects an adrenal tumor and I'm wondering if these "cysts" are actually tumors? I'm having the new CT scan on July 10th and have requested a copy of the CT images as well as a copy of the radiology report from my former GI doctor. We'll see if the office will be cooperative or not. I'm very interested to see what happens.
 
Hi MissLeopard,

It sounds plausible that something could be affecting adrenal gland function as the so called cysts are in an area close to the kidneys. I hope whatever is wrong they figure it out so that something can be done. I'm glad to hear you are seeing an endocrinologist. Best wishes for a diagnosis, I really feel for you. You have been through so much with so few answers. Let's hope this time they can nail it down and get you feeling better.

All the best,

Chris
 
cmack said:
Hi MissLeopard,

It sounds plausible that something could be affecting adrenal gland function as the so called cysts are in an area close to the kidneys. I hope whatever is wrong they figure it out so that something can be done. I'm glad to hear you are seeing an endocrinologist. Best wishes for a diagnosis, I really feel for you. You have been through so much with so few answers. Let's hope this time they can nail it down and get you feeling better.

All the best,

Chris
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Thank you for your support. Sometimes answers take a long time to get but I know it will make me feel better to get the right treatment. :)
 
MissLeopard I hope this CT scan is helpful for you and they are able to figure out what is going on with with your kidneys!

I thought I would pop on as I'm at a bit of a loss and feeling quite frustrated and a little upset. So, I still have diarrhoea! It's been on and off all week and I just can't work out what is causing it :( it's like every other day roughly and the only two things I can think of are its the day after I don't take any Zofran (my nausea hasn't been too bad so I've been taking it less) and I've had some sweets called Werther's Originals (do you have those in the US?) and again it's the day after having those I think. I've not pain massive amounts of attention so I'm not certain on those two things but I'm sure as hell going to make notes over the next few days!
A friend said some diarrhoea/soft stool is really common with an NJ but I'm having type 7 so water with bits in, so surely that's a bit extreme? Plus the first week was fine, it's just been this second week. I'm hoping my dietician gives me a call tomorrow so I can talk to her about it again because I'm miserable to be honest. I'm wearing pads because I get like ten seconds warning that I have to go! I'm scared of leaving the house in case I have an accident and tomorrow I'm meeting my dad so we will be going out and I'm terrified.

I'm so sorry for moaning once again, I just don't know where to turn. In real life I only know one person who has had an NJ and she had no trouble at all, so her opinion is I should just suck it up. My mum isn't been exactly supportive either, her opinion is take an Imodium and again suck it up. I'm not going to take Imodium but I will take some more Zofran, but I don't want to have to just suck it up, I want to know why so I can solve it you know. Why is that so hard for people to understand?!
 
sarahfh said:
MissLeopard I hope this CT scan is helpful for you and they are able to figure out what is going on with with your kidneys!

I thought I would pop on as I'm at a bit of a loss and feeling quite frustrated and a little upset. So, I still have diarrhoea! It's been on and off all week and I just can't work out what is causing it :( it's like every other day roughly and the only two things I can think of are its the day after I don't take any Zofran (my nausea hasn't been too bad so I've been taking it less) and I've had some sweets called Werther's Originals (do you have those in the US?) and again it's the day after having those I think. I've not pain massive amounts of attention so I'm not certain on those two things but I'm sure as hell going to make notes over the next few days!
A friend said some diarrhoea/soft stool is really common with an NJ but I'm having type 7 so water with bits in, so surely that's a bit extreme? Plus the first week was fine, it's just been this second week. I'm hoping my dietician gives me a call tomorrow so I can talk to her about it again because I'm miserable to be honest. I'm wearing pads because I get like ten seconds warning that I have to go! I'm scared of leaving the house in case I have an accident and tomorrow I'm meeting my dad so we will be going out and I'm terrified.

I'm so sorry for moaning once again, I just don't know where to turn. In real life I only know one person who has had an NJ and she had no trouble at all, so her opinion is I should just suck it up. My mum isn't been exactly supportive either, her opinion is take an Imodium and again suck it up. I'm not going to take Imodium but I will take some more Zofran, but I don't want to have to just suck it up, I want to know why so I can solve it you know. Why is that so hard for people to understand?!
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Sending support. Wonder if it could be sugar from the Wuerther's?
 
sarahfh said:
MissLeopard I hope this CT scan is helpful for you and they are able to figure out what is going on with with your kidneys!

I thought I would pop on as I'm at a bit of a loss and feeling quite frustrated and a little upset. So, I still have diarrhoea! It's been on and off all week and I just can't work out what is causing it :( it's like every other day roughly and the only two things I can think of are its the day after I don't take any Zofran (my nausea hasn't been too bad so I've been taking it less) and I've had some sweets called Werther's Originals (do you have those in the US?) and again it's the day after having those I think. I've not pain massive amounts of attention so I'm not certain on those two things but I'm sure as hell going to make notes over the next few days!
A friend said some diarrhoea/soft stool is really common with an NJ but I'm having type 7 so water with bits in, so surely that's a bit extreme? Plus the first week was fine, it's just been this second week. I'm hoping my dietician gives me a call tomorrow so I can talk to her about it again because I'm miserable to be honest. I'm wearing pads because I get like ten seconds warning that I have to go! I'm scared of leaving the house in case I have an accident and tomorrow I'm meeting my dad so we will be going out and I'm terrified.

I'm so sorry for moaning once again, I just don't know where to turn. In real life I only know one person who has had an NJ and she had no trouble at all, so her opinion is I should just suck it up. My mum isn't been exactly supportive either, her opinion is take an Imodium and again suck it up. I'm not going to take Imodium but I will take some more Zofran, but I don't want to have to just suck it up, I want to know why so I can solve it you know. Why is that so hard for people to understand?!
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It's sounds like the added sugar is making your GI tract irritated. I'd try either sugar-free or stop the candy altogether and see if that makes it go away. If it doesn't, I suggest calling your GI doctor and see if maybe the formula is something you are allergic to. Have you had a glucose tolerance test lately? People with gastroparesis often have a co-morbid disorder, especially diabetes.
 
I'm not sure if it's the sugar as the other sweets I have are fine, but maybe it could be the cream and butter?
I've been on the same feed/formula since the NG and actually a bit before as they do it as a supplement drink too just with added flavours, so I'm pretty sure it's not the feed itself.
I've been tested for diabetes loads of times and all is fine, I get low blood sugars sometimes but my GP thinks it's because I have no fat reserves so under stress (which it seems for my body is something simple like showering) so my body just burns glucose when I'm in need of a boost.
I'm planning to call my dietician tomorrow (it's 7pm here) so hoping she can help! Plus she can talk to my GI doctor if she thinks something needs to be done like stool tests or anything.
 
Hi sarahfh,
The Werther's candies contain whey and butter, which are both milk products, so they contain milk protein. The formula for your feed will have broken-down proteins in it to make it easier on your digestive system. Eating foods that contain protein, even in the form of a candy or lozenge, defeats the purpose of using the formula as the proteins in these foods require your digestive system to work more to break them down.

You only want to consume clear liquids, or gels, or hard candies that do not contain any protein in them until you have gradually resumed eating solid food on a very specific return-to-eating diet.

Also, you may have a sensitivity or allergy to milk protein that may be causing the diarrhea. Casein is the milk protein and this is different than milk sugar or lactose. Lactose-free foods will be free of milk sugar, but not milk protein, so you still may react to those products.

I know it is really hard to only have the formula, but if you consume protein in addition to the formula, you are not allowing the formula to do the healing that you need. Good luck.
 
Hi happy, the tube feeding is for my gastroparesis so I'm allowed to eat whatever I can manage within the limits of my gastroparesis :) some days I manage a bit of food, others I don't but the feeds are to take that pressure off my stomach.

I do have a bit of lactose intolerance so I am wondering if that's part of the problem, I'm going to cut out the Werthers and see how that goes.
 
I thought I would pop on as I'm at a bit of a loss and feeling quite frustrated and a little upset. So, I still have diarrhoea! It's been on and off all week and I just can't work out what is causing it it's like every other day roughly and the only two things I can think of are its the day after I don't take any Zofran (my nausea hasn't been too bad so I've been taking it less) and I've had some sweets called Werther's Originals (do you have those in the US?) and again it's the day after having those I think. I've not pain massive amounts of attention so I'm not certain on those two things but I'm sure as hell going to make notes over the next few days!
A friend said some diarrhoea/soft stool is really common with an NJ but I'm having type 7 so water with bits in, so surely that's a bit extreme? Plus the first week was fine, it's just been this second week. I'm hoping my dietician gives me a call tomorrow so I can talk to her about it again because I'm miserable to be honest. I'm wearing pads because I get like ten seconds warning that I have to go! I'm scared of leaving the house in case I have an accident and tomorrow I'm meeting my dad so we will be going out and I'm terrified.
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Two things Sarah - I'd avoid the sweets, since they're the new thing you've added (right?). My kiddo also had problems with whey protein - including the hydrolyzed whey in Peptamen Jr. The other thing I'd do is see if you can switch formulas. What formula are you on? Is it elemental? It's best to use semi-elemental or elemental with a J tube. My kiddo could not tolerate semi-elemental (in the US, Peptamen and Pediasure Peptide are the ones commonly used for kids) and it caused BAD diarrhea for my daughter - 10 times a day.

We had to switch to Neocate which is elemental and that worked, though she continued to have very soft stool on it and still does.

Our GI said that soft/liquid stools are common for some people on tube feeds. Liquid in = liquid out for some people. The urgency isn't normal though - that is more concerning.

I would definitely talk to your dietician and GI. It could be a total separate problem unrelated to your tube - inflammation, infection etc.

Lactose intolerance could also cause diarrhea - it does for my daughter.
 
Maya142 said:
Two things Sarah - I'd avoid the sweets, since they're the new thing you've added (right?). My kiddo also had problems with whey protein - including the hydrolyzed whey in Peptamen Jr. The other thing I'd do is see if you can switch formulas. What formula are you on? Is it elemental? It's best to use semi-elemental or elemental with a J tube. My kiddo could not tolerate semi-elemental (in the US, Peptamen and Pediasure Peptide are the ones commonly used for kids) and it caused BAD diarrhea for my daughter - 10 times a day.

We had to switch to Neocate which is elemental and that worked, though she continued to have very soft stool on it and still does.

Our GI said that soft/liquid stools are common for some people on tube feeds. Liquid in = liquid out for some people. The urgency isn't normal though - that is more concerning.

I would definitely talk to your dietician and GI. It could be a total separate problem unrelated to your tube - inflammation, infection etc.

Lactose intolerance could also cause diarrhea - it does for my daughter.
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They are literally the only thing I can think of that I've changed so I'm stopping those! I've had like two every other day but then if I think about it the diarrhoea has been every other day too. Although again I've been taking the Zofran intermittently mostly for the diarrhoea as my nausea hasn't actually been that bad except once this week (my own fault, I ate too close to bed time). I'm going to try and add a photo of the ingredient list for my feed, it doesn't mention whey in specific but does say about hydrolyzed milk protein, I'm not sure if that's the same thing? This one is basically the one before an elemental feed in terms of how broken down it is. But I will definitely bring it up with the dietician when I speak to her.

I don't expect to have fully formed solid stools at all, it's the extremely watery and urgent stool that has concerned me. I did wonder if it's unrelated to the feed too, a part of me wonders if there is still some underlying infection from last time that's reared it's head again. I may ask my dietician if it's worth doing a sample and fecal calprotectin if cutting out the sweets doesn't solve it.

I guess after the first week of feeds going so well I just got lulled into a false sense of security so it's come as a bit of a blow.
e13cb22613ca586e513e6e1f4d50eefa.jpg
 
I'm going to try and add a photo of the ingredient list for my feed, it doesn't mention whey in specific but does say about hydrolyzed milk protein, I'm not sure if that's the same thing? This one is basically the one before an elemental feed in terms of how broken down it is. But I will definitely bring it up with the dietician when I speak to her.
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So I think that would be a semi-elemental feed. Elemental is broken down into amino acids.

This is how Neocate is described on the website:
Neocate Splash, Unflavored is a hypoallergenic nutritionally complete, amino acid-based liquid formula for individuals one year of age and older. It is available in a convenient, ready-to-drink form for individuals on the go, has a mild, pleasant taste and is ideal for tube feeding or oral administration. Neocate Splash, Unflavored is gluten- and casein-free.

Neocate Splash, Unflavored is for the dietary management of cow and soy milk allergy, multiple food protein intolerance (MFPI), eosinophilic esophagitis (EoE), short bowel syndrome (SBS), malabsorption, and other medical conditions of gastrointestinal tract impairment in which an elemental diet is required.
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The other one used for kids here is Elecare. I think Vivonex is an adult formula that is also elemental but honestly, my daughter still sees a pediatric GI so I don't know.

Semi-elemental formulas can cause diarrhea in some people, while elemental formulas are much more likely to cause constipation.

Try cutting the sweets and then see what happens. I would also ask your dietician about the Zofran - I would guess it's probably not such a good idea to take it to prevent diarrhea if the nausea isn't bothering you. I know it's a really tough situation - hang in there.
 
Hi sarahfh,
I actually did forget the reason you were on the tube feeds. Whoops.
As Maya142 discussed above--I had to move to Vivonex Plus due to a milk intolerance.

I hope you can get it all sorted out soon. Good luck.
 
Maya, yes, Vivonex is an elemental formula that's used for adults. I have issues with coconut, and a lot of the formulas have coconut oil, so when I did 2 weeks of EEN they gave me Vivonex as it's apparently the only adult elemental formula that does not contain coconut oil. I drank it orally, I was never tube fed (it tasted pretty horrible but it did help me a lot, and after awhile I actually grew to like the taste and I've even had cravings for it). Sarah, I'm not sure if they have Vivonex in the UK or not, but if the candy isn't the culprit then I agree that it may be time to look at doing elemental rather than semi-elemental. I will say that I had diarrhea the first few days while on Vivonex, as my body adjusted to it, but that went away pretty quickly, and I was told by the nurse that it's very common to have diarrhea as your body adjusts to elemental formula.
 
Maya I think you're right I think it would be semi elemental. I think the elemental one here is Elemental 028 extra, so I will have a chat about it with the dietician. I would need to get my rate up a lot and stay on longer feeds as it's only 0.8 calories per ml, but if it came to it that's not a huge problem.

I will definitely cut the sweets out as my first thing to try! Yeah normally I only take the Zofran when I'm really nauseous and my other antisickness isn't helping enough (I think it's called Compazine in the US but not sure). I just don't want to take Imodium if I can help it as that sends me too far towards constipation.

Happy that's okay don't worry, there are so many people on here it's so easy to get mixed up :)

Cat I'm really hoping it's just the sweets and nothing more! I initially felt like because I had no trouble with the feed through the NG it should be fine through the NJ but I guess it's not always the case and I could well be wrong. I guess time will tell. I'm on full "stop the diarrhoea" mode for tomorrow as I can't actually avoid leaving the house tomorrow, but once tomorrow is out of the way I'm going to stop the Zofran (unless nausea means I have to take it) as well as the sweets of course then see what happens.

I guess I partly wonder whether it's some residual/recurring infection from the first NJ attempt but that was 8-9 weeks ago now so surely it would have caused problems before now if it was that?
 
sarahfh said:
Maya I think you're right I think it would be semi elemental. I think the elemental one here is Elemental 028 extra, so I will have a chat about it with the dietician. I would need to get my rate up a lot and stay on longer feeds as it's only 0.8 calories per ml, but if it came to it that's not a huge problem.

I will definitely cut the sweets out as my first thing to try! Yeah normally I only take the Zofran when I'm really nauseous and my other antisickness isn't helping enough (I think it's called Compazine in the US but not sure). I just don't want to take Imodium if I can help it as that sends me too far towards constipation.

Happy that's okay don't worry, there are so many people on here it's so easy to get mixed up :)

Cat I'm really hoping it's just the sweets and nothing more! I initially felt like because I had no trouble with the feed through the NG it should be fine through the NJ but I guess it's not always the case and I could well be wrong. I guess time will tell. I'm on full "stop the diarrhoea" mode for tomorrow as I can't actually avoid leaving the house tomorrow, but once tomorrow is out of the way I'm going to stop the Zofran (unless nausea means I have to take it) as well as the sweets of course then see what happens.

I guess I partly wonder whether it's some residual/recurring infection from the first NJ attempt but that was 8-9 weeks ago now so surely it would have caused problems before now if it was that?
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Hydrolyzed milk protein (also known as casein) means the protein has been broken down into amino acids, but it depends on how hydrolyzed it was during manufacture. If it was highly hydrolyzed, it should be safe for even people with milk allergies to consume. I think it is best to discuss with your dietician and see if there is an alternative if the diarrhea/urgency persists. Maybe there is too much sucrose/sugar in the formula which is not being broken down since it bypasses your stomach.

Believe it or not, Zofran can actually cause diarrhea (listed as a common side effect). If you're taking too much of it, I would imagine the diarrhea would worsen. Taper back if you're able and see if that helps, too. :)
 
Ahh I see thank you for that MissLeopard :) I'm assuming with it being a broken down feed it will be fairly well hydrolyzed then, and the bottle clearly states lactose free so I'm not worried about it in that sense. But I will definitely be talking to her about it if cutting out these sweets doesn't work!

I've been taking 4mg once every couple of days with the Zofran so not much at all, I usually find it constipates me if I take it more than twice per day and at times just once per day will do it, so I'm fairly certain it's not that.

I'm really just hoping that this isn't going to be how things will be the whole time I have the NJ.
 
I don't think it should be - I would guess it's a formula intolerance. What is the rate you're at Sarah? Maybe it's too fast.

Peptamen Jr also has hydrolyzed whey protein and we were over and over again that it was hydrolyzed so it couldn't possibly be causing the diarrhea. But then when they switched my daughter to Neocate and the diarrhea stopped, they agreed that was probably the culprit. I suppose it is very individual and it depends on the person. Many people tolerate semi-elemental formulas without issues.

Hang in there!!
 
sarahfh said:
Ahh I see thank you for that MissLeopard :) I'm assuming with it being a broken down feed it will be fairly well hydrolyzed then, and the bottle clearly states lactose free so I'm not worried about it in that sense. But I will definitely be talking to her about it if cutting out these sweets doesn't work!

I've been taking 4mg once every couple of days with the Zofran so not much at all, I usually find it constipates me if I take it more than twice per day and at times just once per day will do it, so I'm fairly certain it's not that.

I'm really just hoping that this isn't going to be how things will be the whole time I have the NJ.
Click to expand...

Yeah, it constipates me, too. I take it when my nausea gets really bad and I start gagging in the morning - which hasn't happened in several days (YAY!). I've been eating earlier in the evening and it's been helping so that the food has time to digest before I lay down. It's helping so much that I've actually been able to eat breakfast the last 2 days but then I'm not very hungry at lunch 3 hours later (slow transit time, I guess). I still plan to ask for a repeat GES with a longer test time of 4-6 hours since that's the gold standard. I have an appointment with my newest GI on July 20th (not going back to the one who gave me the 2 hour test as I can't stand her PA or the office she's at - it's too busy and they don't call back).
 
I'm only on 50ml an hour at the moment so not very fast at all really.

I think I will just have to see how things go over the next 3-4 days with cutting out the sweets and also see what my dietician says when I speak to her. I will keep you updated. Thank you so much for all your help though Maya!
 
Tomorrow is my adrenal gland CT and I have to drink a bottle of nasty barium 1 hour before the scan so I have to bring it to work with me (I'm leaving work early at 3:30pm to get to the imaging center at 5pm). I also completed the 2 saliva cortisol tests so they have to go back to the lab tomorrow - I had to redo them because there wasn't enough saliva on the gauze pad last time but this time they were REALLY saturated. I'm hoping this gives an answer to my symptoms. :)
 
I still plan to ask for a repeat GES with a longer test time of 4-6 hours since that's the gold standard. I have an appointment with my newest GI on July 20th (not going back to the one who gave me the 2 hour test as I can't stand her PA or the office she's at - it's too busy and they don't call back).
Click to expand...

I haven't heard of a six hour test - since at 4 hours, less than 10% of the meal is supposed to be left in the stomach (for a person with normal gastric emptying) - but a 4 hour test is definitely standard. It is possible that you have mildly delayed gastric emptying and the 2 hour test missed it. But it's also possible your symptoms are caused by something else entirely.

We were told if it was severely delayed, then a 2 hour test would have caught it. In fact, our children's hospital will even send kids home at 2 hours if their emptying is very severely delayed, since it's not going to change and there is no point in keeping them for the four hours.

I would not get stuck on one diagnosis (for example Gastroparesis), no matter how much you think your symptoms match. The GI tract is complicated and many different things can cause GI symptoms.

Good luck with the adrenal CT!
 
Maya142 said:
I haven't heard of a six hour test - since at 4 hours, less than 10% of the meal is supposed to be left in the stomach (for a person with normal gastric emptying) - but a 4 hour test is definitely standard. It is possible that you have mildly delayed gastric emptying and the 2 hour test missed it. But it's also possible your symptoms are caused by something else entirely.

We were told if it was severely delayed, then a 2 hour test would have caught it. In fact, our children's hospital will even send kids home at 2 hours if their emptying is very severely delayed, since it's not going to change and there is no point in keeping them for the four hours.

I would not get stuck on one diagnosis (for example Gastroparesis), no matter how much you think your symptoms match. The GI tract is complicated and many different things can cause GI symptoms.

Good luck with the adrenal CT!
Click to expand...
Yes, good luck
 
MissLeopard good luck with the CT and the cotisol tests, I hope these give you some answers!
It sounds like it's worth trying to get the 4 hour test done, as Maya said though anything longer isn't really needed. Mine was a 2.5 hour test in the end, it was a different meal though (mostly mashed potato) but it showed a "significant" delay and empying time was calculated at double the expected time, so I guess the time you're there will depend on the testing centres protocol and things like that.

Quick little update from me, I haven't spoken to my dietician yet, I decided to stop those sweets and see how I got on before talking to her. Then today being Monday she will be super busy on the ward today so I will leave it until tomorrow. Things have settled somewhat, I'm still having more bowel movements than I was and there is still a small amount of diarrhoea each day, but it's so much better than it was. I did have to take Zofran on Thursday and Friday for my nausea so obviously that affected things over the weekend so today will be a bit of a test for my bowels, but already this morning things have been quieter so far than usual for this time of day! I'm really hoping it was just the sweets and it's not feed intolerance or something. I'm still on 50ml an hour but planning to go up to 55ml an hour tomorrow.
 
sarahfh said:
MissLeopard good luck with the CT and the cotisol tests, I hope these give you some answers!
It sounds like it's worth trying to get the 4 hour test done, as Maya said though anything longer isn't really needed. Mine was a 2.5 hour test in the end, it was a different meal though (mostly mashed potato) but it showed a "significant" delay and empying time was calculated at double the expected time, so I guess the time you're there will depend on the testing centres protocol and things like that.
Click to expand...

Thanks. I wish that I went to a facility that was specialized in GES tests because they only gave me eggs with nothing else. It was only 1 egg so it moved rather quickly and really, to me, wasn't a good indicator. If I had more in my stomach, it probably would have been much more slow. Anyway, I still plan to discuss it with the new GI next week on the 20th and, if she thinks it's necessary, I plan to have it redone. Right now, my main priority is figuring out my hormonal issues because those have plagued me for YEARS and I am worried that if it's Cushing's, it could cause damage because it makes blood pressure elevated and can cause metabolic syndrome. I don't have diabetes now and I certainly don't want it in the future.
 
Ahh I see, that doesn't sound like very much food to get an accurate result, you're right. Definitely bring it up with the new GI, it's worth a discussion at the very least. I'm glad eating earlier in the evenings is helping you though 😊 I know personally I can't eat after 6pm at all or I am up in the night feeling like I'm going to puke!

I hope the CT scan sheds some light on your adrenal glands and they can get to the bottom of the hormonal issues. It is entirely possible they could be causing the GI syptoms. I know if I'm off my contraceptive pill I have distinct parts of my cycle where various gastro symptoms get worse.
 
sarahfh said:
Ahh I see, that doesn't sound like very much food to get an accurate result, you're right. Definitely bring it up with the new GI, it's worth a discussion at the very least. I'm glad eating earlier in the evenings is helping you though 😊 I know personally I can't eat after 6pm at all or I am up in the night feeling like I'm going to puke!

I hope the CT scan sheds some light on your adrenal glands and they can get to the bottom of the hormonal issues. It is entirely possible they could be causing the GI syptoms. I know if I'm off my contraceptive pill I have distinct parts of my cycle where various gastro symptoms get worse.
Click to expand...

I received a CD copy of the CT scan and noticed that there was some abnormality in the adrenal area - they look enlarged and I noticed there was a growth near my kidneys. I won't get the radiology report until tomorrow but I'm pretty sure my doctor will be calling me. I'm still awaiting the results of the cortisol tests that I had to redo as they were turned in Monday afternoon and it takes them 5-7 business days for turnaround. They are sent off to a larger lab in Florida and then they are posted on the lab website in their portal. I probably won't get them until the middle of next week - probably Tue-Thu somewhere. My doctor usually calls before I'm able to see them, though. :)
 
PRAISE GOD! The tests came back normal! No evidence of tumor or nodules on adrenal glands or elevated cortisol! I am so relieved! I don't know what it was that I saw on the CT (I'll bring the CD when go for my appointment) but I have never been so glad to be proven wrong! No surgery and my symptoms can be managed medically - most likely with Glucophage (aka Metformin)! I am over the moon right now! :)

I am scheduled tentatively for a follow-up on Sept 28th but the nurse will try to get me in sooner if they have a cancellation. I plan to have my OB/Gyn do a pelvic ultrasound on Aug 8th when I see him again just to make sure there is nothing funny going on like another ovarian cyst (that area was not visible on the CT) or a thickened endometrial lining again. :)
 
MissLeopard I'm so relieved for you that the tests have come back normal that must be a huge relief! I hope everything goes well with the OB/GYN and the new GI doctor too 😊
 
Is there a way to post a picture on here? I kind of want to show you guys the discoloration I've had on my stomach for six months and see what you think. It has to be a sign of something! I just don't know what....
 
My stomach was a mess this weekend. Stress played a major factor because my grandfather was presumed to be in the active dying process - this was what the hospice nurse told my family. However, my uncles were adamant something was wrong and they were correct - my grandfather had been given too much sedating medication (one narcotic and one benzo) within 2 hours of each other. He was gasping for air several times. Fortunately, over the course of the weekend, the medication metabolized out of his system and he became more responsive. I cannot bear being around my mom's family for long, though. There was so much arguing and heated tempers on Saturday which drained me emotionally. I came to work this morning but it's so hard to be here without thinking about what went on. I'm doing my best, though. Please keep my family - especially my grandfather - in your prayers.
 

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