# Crohn's and Gastroparesis Support Group



## kimmidwife

My daughter was just given a secondary diagnosis of Gastroparesis. I have been communicating with a few others on the forum with this same problem and I thought we should start a support group so if others have it they can join us and give us advice and suggestions.


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## UnXmas

I'll join. I've had gastroparesis for years. Nearly all the treatment seems to be dietary recommendations. There are meds for reflux, but there really needs to be more meds for the gastroparesis itself!


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## Essieluv

I was just diagnosed with gastroparesis today after an abnormal gastric emptying scan. I'm not surprised, though, as I have suspected gastroparesis for over a year. I was finally able to get my new GI to order an emptying scan (none of my old ones would even consider it, even at Mayo Clinic). I'm glad I pushed for the test, because now I know why I am losing so much weight and am nauseous all the time.


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## kimmidwife

Essie,
Welcome to the group. We haven't had much activity. What are they doing to treat you? My daughter is really struggling.


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## Stardust_Fiddle

Hi, all. After being symptomatic for a year and growing steadily worse, I have finally been referred to a motility specialist, whom I will be seeing on May 20. I am sure that I have gastroparesis, and I am looking forward to a solid diagnosis and a treatment plan because I am miserable and very underweight (and still losing weight). :ybatty:


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## Stardust_Fiddle

kimmidwife said:


> Essie,
> Welcome to the group. We haven't had much activity. What are they doing to treat you? My daughter is really struggling.


Is she doing any better? I have been thinking about her and hoping that she was improving!


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## Essieluv

My GI gave me erythromycin but I am concerned it will interact with a few of my meds and worsen my existing heart rhythm problem, so I haven't started it yet. I am talking to my doc about it tomorrow.


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## Everly

I found out I had delayed gastric emptying from my first pillcam. It sat in my stomach for eight hours. So I was tested, and sure enough. Although my doctor calls it a mild delay. But at four hours, I still had a third of the eggs and toast still in my stomach. So I'm honestly not sure what that counts as. Anyways, glad to see there's a support group on here now!


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## littlemissh

I am awaiting a radio nucleotide gastric emptying scan to see if I have gastroparesis. 

I have all the unpleasant symptoms and requiring ongoing nasojejunal feeding initially thought to be due to active disease. I had a dummy pill cam which was in my stomach 22 hours later so they are now wondering about gastroparesis. I hope not!

The request was sent urgently but I am not sure how long it will take as it is not done at my local hospital.

Everly this is the criteria I found about how gastroparesis is graded:-

 'Delayed gastric emptying was graded according to the gastric retention at 4 hours: mild (≤20% gastric retention at 4 hours), moderate (>20 to 35%), and severe (>35%) (13,14).'

From this paper

'Gastroenterology. Author manuscript; available in PMC Jan 1, 2012.
Published in final edited form as:
Gastroenterology. Jan 2011; 140(1): 101–115.
Published online Oct 20, 2010. doi:  10.1053/j.gastro.2010.10.015
PMCID: PMC3089423
NIHMSID: NIHMS247177
Clinical Features of Idiopathic Gastroparesis Vary with Sex, Body Mass, Symptom Onset, Delay in Gastric Emptying, and Gastroparesis Severity

The NIDDK Gastroparesis Clinical Research Consortium (GpCRC)*†


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## Essieluv

I have a question maybe someone could help out with...I am on levsin for IBS, but it is an antispasmodic. It basically slows down digestion. Should I talk to my GI about that possibly worsening my gastroparesis, or is it harmless? Anyone have experience with that?


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## xmdmom

The Gastroparesis patient association for cures and treatments website
http://www.g-pact.org/gpcauses.html says 





> Temporary gastroparesis can be caused by certain medications such as narcotics and some IBS drugs including *levsin* and bentyl, calcium channel blockers and certain antidepressants


So definitely speak to your gi about levsin.


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## kimmidwife

I second XMDMOM about the Levsin. It can worsen the GP.
Stardust,
I am so glad you finally have an appt, I really hope they figure something out to help you!
GP sucks. We are waiting to hear about an appt for my daughter with the peds motility people in Ohio.


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## Essieluv

I saw online that sometimes motility disorders (gastroparesis) can be colitis-induced. I am having trouble finding anything definitive, though. Curious to hear if anyone knows about this? Certainly a question I will be asking my GI next appointment.


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## Stardust_Fiddle

I can't speak about colitis, but I am convinced that my Crohn's caused my motility issues. I didn't have problems before I had Crohn's, and since my Crohn's is in my stomach and duodenum and it took over six months for Humira to begin making a difference, it makes sense to me that it did significant damage.


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## Essieluv

I agree with you that IBD has to play a role in motility disorders. How can it not? I only recently started having motility issues, since my most recent flare. I think that we just have to wait for science to catch up with our gut feelings...


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## Stardust_Fiddle

Sometimes I think that science will never catch up! lol :tongue:


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## Essieluv

Haha, yes me too.


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## kimmidwife

Me three!


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## littlemissh

Saw consultant today for results of GES. I have gastroparesis. He thinks from IBD or post surgery where I had perf and oversew. 

I have had an NJ tube since november last year (except for a 4 week reprieve when I pulled it out in a fit of pique to see if I would be ok), so it looks like a permanent PEJ, and /or gastric pacing if I can get funding and if the gastroparesis guy from the Royal London agrees. 
My consultant ringing him and also St Marks as he is not quite sure whether PEJ is a good idea in me (because of GD Crohns which is much better on Humira, last scope showed inflammation throughout stomach but no ulcers now)

If not it would be long term nj tube which would mean 6-8 weekly scopes for innumerable years.
Wants to give erythromycin a go but isn't convinced it will help and contact Abbott to see if a known side effect of Humira.

Deep joy….not. Bit depressing really.


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## Stardust_Fiddle

littlemissh said:


> Saw consultant today for results of GES. I have gastroparesis. He thinks from IBD or post surgery where I had perf and oversew.
> 
> I have had an NJ tube since november last year (except for a 4 week reprieve when I pulled it out in a fit of pique to see if I would be ok), so it looks like a permanent PEJ, and /or gastric pacing if I can get funding and if the gastroparesis guy from the Royal London agrees.
> My consultant ringing him and also St Marks as he is not quite sure whether PEJ is a good idea in me (because of GD Crohns which is much better on Humira, last scope showed inflammation throughout stomach but no ulcers now)
> 
> If not it would be long term nj tube which would mean 6-8 weekly scopes for innumerable years.
> Wants to give erythromycin a go but isn't convinced it will help and contact Abbott to see if a known side effect of Humira.
> 
> Deep joy….not. Bit depressing really.


Sorry to hear about your situation! Are you still able to eat some solid food and/or drink liquids with a tube? I have chronic intestinal pseudo-obstruction and am fighting having a feeding tube placed for nutrition and calories (I see my specialist in a few weeks). I'm on Humira too. Right now I'm trying Remeron for the motility, and the next drug my doctor mentioned trying (if my insurance will pay for it) is a cannabinoid medication. Having a motility issue on top of Crohn's really stinks, and I feel your pain. :ybatty: I hope that things work out for you! :ghug:


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## littlemissh

Thanks. I can tolerate some fluids but solids more often than not make me vomit. Sometimes I can have  a small amount and am ok and other times even a small amount makes me sick, and I have fairly persistent nausea. 
I have tried domperidone and am currently on metoclopramide and ondansetron which ease it a bit as long as I don't eat.
I tried to avoid a tube but lost too much weight. Even with a tube, I have been losing weight over the last few months, so I had my regime changed today.
My gastro didn't mention remeron (mirtazepine in the uk) though the gastroparesis consultant may. Cannabinoids are not legal as yet in the UK.
I guess time will tell. The thought of never being able to eat more than a few mouthfuls is a bit depressing.

Good luck with avoiding the tube, I hope you manage it.


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## xmdmom

Are the pacemakers they use for gastroparesis out of the question for people with Crohn's?


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## Stardust_Fiddle

I do liquids for at least one "meal" a day, more when I'm really flaring. Cannabis isn't legal in my state, but apparently the medication (I forget the name) is because it's just got cannabis as an ingredient. However, there's a high likelihood, according to my doctor, that my insurance will not cover it, in which case I wouldn't be able to take it because I sure as heck can't afford it! I've lost a lot of weight too; my bmi is around 15 now, but I'm not ready to get a tube yet. It's nice to know that you can still do some solids and liquids while on a tube though. I sure wish they'd find a cure for all of these digestive diseases, and for other ailments as well!


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## littlemissh

xmdmom said:


> Are the pacemakers they use for gastroparesis out of the question for people with Crohn's?


I don't know as yet. My local gastro doesn't think so, but is taking advice from an IBD specialist at St Marks Lomdon and the gastroparesis guy.
I seem to be being sent all over the country at the moment. He is also asking about the safety of a PEJ in me as I have GD crohn's…but feels there is little option really
He is ringing me once he has had some discussions, hopefully not too long.


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## Stardust_Fiddle

You're one of the only people I've heard of who has gastroduodenal Crohn's, which is the form that I have as well. There must be a link between that and the motility disorders. I just had Xrays last week to check for enteropathic arthritis and am awaiting the results. Such fun! :ybatty:


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## Essieluv

Stardust_Fiddle said:


> You're one of the only people I've heard of who has gastroduodenal Crohn's, which is the form that I have as well. There must be a link between that and the motility disorders. I just had Xrays last week to check for enteropathic arthritis and am awaiting the results. Such fun! :ybatty:


I have Enteropathic Arthritis. I was diagnosed with that a few months ago along with fibromyalgia, although I've had both for a few years.


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## Stardust_Fiddle

I do have fibromyalgia for sure, and also Raynaud's. I have all the symptoms of enteropathic arthritis, so we'll see what the Xrays say. However, I'm already on Humira, which supposedly treats arthritis, so I don't know if there's another medication I can take for arthritis or not. :confused2:


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## Essieluv

I was on sulfasalazine for the arthritis for a while. That is also used for Crohn's, and can be used with Humira, so perhaps that may be an option?


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## Stardust_Fiddle

I'll keep that one in mind, thanks!


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## kimmidwife

XMDMOM,
The gastric pacemaker is being used in people with Crohn's. We are waiting to meet with a specialist to discuss Caitlyn's options for treatment including the pacemaker. We are hopefully seein him in July.


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## littlemissh

I am due to see the gastroparesis team on friday and am a little anxious to say the least.
The consultant will hopefully tell me what he feels should be done. I have been told that I need a jejunostomy for feeding, instead of the NJ tube I currently have, but my local team are not sure if it is safe due to GD crohn's. 
The thing that scares me most is the thought that gastrectomy is one of the 3 options available (do nothing and never eat again, gastric pacemaker, gastrectomy).

I hope he can give me some plans and not just say I need a million more tests.


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## kimmidwife

Good luck! I will be praying he has a good plan for you!!!


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## Stardust_Fiddle

Littlemissh, I hope that you are able to work out a good plan with your doctors!

Kimmidwife, how is Caitlyn doing?

I just started Marinol, a cannabinoid, today for my gastroparesis. I am really hoping that it will be beneficial and allow me to eat more and gain some weight; otherwise I have to get a feeding tube. Since Marinol has a little bit of marijuana in it, I'm wondering if it might help my Crohn's too. Here's hoping!


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## kimmidwife

Stardust fiddle,
She is not doing great. I will be really curious to hear your experience with the marinol. Keep us posted. I am keeping my fingers crossed that it works miracles for you!


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## Stardust_Fiddle

Sorry to hear that. I am also taking Remeron, which helps slightly but not nearly enough. I started using crystallized ginger too, along with an herbal liquid supplement called Iberogast. The Iberogast is available on Amazon (downside is the cost) and seems to help me. It's a prokinetic, and it doesn't taste good but you just have to mix 20 drops with a little bit of warm water and drink it. It might be worth a shot.


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## kimmidwife

Thanks I will look into it.


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## Stardust_Fiddle

Incidently, it appears that I have gastroparesis and dysmotility of my small intestine/pseudo-obstruction. My doctor doesn't want to do testing because my body is so fragile right now, but I definitely fit the bill for both. :ybatty: I'm definitely thinking this is linked to my Crohn's because my stomach and duodenum are the areas where I had ulcers and chronic inflammation. It will be interesting to find out what they see at my endoscopy/colonoscopy in September.


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## kimmidwife

Keep us posted and let us know how you are doing!


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## Stardust_Fiddle

I will, thanks! So far, no real side effects from the marinol other than more fatigue and a little spaciness. I wasn't as nauseated today, whether that is due to the marinol or just a good day.


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## kimmidwife

That sounds good , really hope it works!


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## Stardust_Fiddle

Me too! I wish we were all doing better! :ghug:


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## littlemissh

Well I had my appointment, he was very well informed. His unit has placed the largest number of Enterra devices in the UK and published data etc. He is also a very experienced laparoscopic surgeon, he said that despite previous abdo ops he thought it very, very unlikely he would have to convert to an open procedure.

It didn't go as I expected, I thought it would be a discussion of further meds I might try etc. But he had read all my notes that had been forwarded and GES results and said that really the only viable option is the Enterra gastric pacemaker.
He explained that it is not a cure but in those who have a good response reduces nausea, vomiting and enables more food to be eaten.

Some people still need supplemental enteral feeding but he wants to continue with NJ feeds until we know how successful it is. If I need supplemental feeding he feels a PEJ would be unsuitable and he would place a surgical jejunostomy.

His unit always puts in temporary pacing wires first which are placed endoscopically and stay in for a week. 50% have a good enough response to proceed with the permanent Enterra device. This involves an overnight stay, is placed endoscopically and the op is about equivalent to an appendicectomy.

He said that GD crohn's was not a contraindication to surgery but gd crohns is rare and gastroparesis is rare, the combination is even rarer so little data is available. I will be a bit of a guinea pig.

So I am now on the list for the temporary pacing wires. He doesn't want to do it before my holidays in early august so it will be after that.

I think I have covered most of what he said, if you have any questions, feel free.
One thing I forgot to ask was how will I manage with an NJ tube AND the pacing wires for the 7 day trial. Will they be in the same nostril etc.


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## Stardust_Fiddle

I was wondering about the viability of someday getting the Enterra device if needed, and will be praying that it proves effective for you! Having GD Crohn's and gastroparesis together is certainly no walk in the park! I just got my endoscopy/colonoscopy bumped up from September 3 to August 8 because I'm having recurrent Crohn's symptoms again. :ybatty: I'm relieved to get in sooner but not looking forward to the prep!:tongue:


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## kimmidwife

Littlemissh,
  I am wishing you good luck! We meet with the specialist in two weeks to discuss if Caitlyn is a candidate for the pacemaker or what other therapies might be available. I also read about a vagus nerve stimulator they are using in  Europe that is not available in the US. I can't remember the name right now. But it sounded interesting.
Stardust,
I hope the colonoscopy goes smoothly and easily.


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## Johnnysmom

My DD (non crohn's)  has been suffering from frequent nausea for some time now.  I was wondering more specifically what the symptoms of GP were.

My daughter (age 9) complains of a 'throat feeling' nearly every evening.  Usually around the time she goes to bed.  She says it doesn't feel like anything is stuck in her throat she is just nauseated but says she doesn't feel it in her stomach, just throat.  She has no pain or bloating but will occasionally have heartburn after dinner, a tums seems to fix the heartburn quickly.  She says she feels slight nausea before she eats, it feels better after she starts eating and is able to eat normally and feels well after.  The nausea starts several hours later.  She lays in agony for about 2 hours and then drifts off to sleep.  She wakes up feel great the next morning. 
At first we thought she was just not drinking enough water during the day and so her food was not digesting well because of the lack of water.  But now we are not sure.   Does any of this sound familiar?  

She would occasionally have this problem over the years, and then it would seem to go away.  It oddly seems worse in the summer.  She is very active and eats a healthy diet.  

Any advice or insight would be appreciated.  She will go for her 10 year check up in 2 weeks and I will have a chance to chat with the dr then.


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## kimmidwife

It sounds more like reflux to me. The nausea with GP usually starts during meals or immediately after. Does she have any constipation? That is also a symptom of GP. I would definitely ask the doctor about it though.


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## Stardust_Fiddle

That doesn't sound like GP to me, either, but it definitely wouldn't hurt to ask the doctor. There is such a thing as esophageal dysmotility, though, so you might want to ask about that as well. Keep us updated!


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## littlemissh

It sounds more like reflux (GORD). For me the symptoms of GP are fairly persistent nausea, very full after a few mouthfuls of food and vomiting after most solids, occasionally after liquids.

I have copied the GP score -sorry I can't get the whole score table for some reason but it gives the symptoms. Each symptoms is scored 0-5.

 	 	None	Very mild	Mild	Moderate	Severe	Very severe
1.	Nausea (feeling sick to your stomach as if you were going to vomit or throw up)	0	1	2	3	4	5
2.	Retching (heaving as if to vomit, but nothing comes up)	0	1	2	3	4	5
3.	Vomiting	0	1	2	3	4	5
4.	Stomach fullness	0	1	2	3	4	5
5.	Not able to finish a normal-sized meal	0	1	2	3	4	5
6.	Feeling excessively full after meals	0	1	2	3	4	5
7.	Loss of appetite	0	1	2	3	4	5
8.	Bloating (feeling like you need to loosen your clothes)	0	1	2	3	4	5
9.	Stomach or belly visibly larger	0	1	2	3	4	5


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## bhoffman

I have gastroparesis and crohns disease. My crohns is in remission, however I have a gastric electrical stimulator called Enterra Therapy made by Medtronic for my gastroparesis. I had it implanted last August and it has been a God send. I was throwing up for over a year, had the surgery, in the last year I have vomited only 3 times. I'm not nauseated like I was either. Note that results vary from person to person, so my success may not be the same for others. However, it is totally worth talking to your GI about.

 * Eligability requirements do apply *


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## Stardust_Fiddle

bhoffman said:


> I have gastroparesis and crohns disease. My crohns is in remission, however I have a gastric electrical stimulator called Enterra Therapy made by Medtronic for my gastroparesis. I had it implanted last August and it has been a God send. I was throwing up for over a year, had the surgery, in the last year I have vomited only 3 times. I'm not nauseated like I was either. Note that results vary from person to person, so my success may not be the same for others. However, it is totally worth talking to your GI about.
> 
> * Eligability requirements do apply *


That's fabulous! I'm so happy for you! anda:


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## Johnnysmom

I think my DD does have GERD.  She went for her 10 year check up and she was very under weight for her height and Dr was concerned about her symptoms.  She ordered labs and a fecal cal.  We have gotten the labs back but are still waiting on the fecal cal.  Everything was normal range except:

WBC range 4.5-13.5, she had a 4.2
Lymphs range 38-42, she had a 54
Neutrophil Abso range 1.8-8.0, she had a 1.51
Basophils range 0-1, she had a 2.

Dr. prescribed Prevacid for 2 weeks.  We are waiting for fecal cal but she doesn't seem very concerned about the labs.  My son's GI is uncomfortable with his WBC and neutrophil level right now and his are higher than hers.  Might just be because he is on meds.  

Anything else you all think I should ask about?


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## Johnnysmom

Also….
She has maybe mild occasional constipation.  Nothing like what my son has.  She does get mouth sores and had blood in her stool once.


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## littlemissh

I have a date for the trial of the gastric pacemaker (neuromodulator-Enterra). It is the 30th september. I really hope it works and I can finally eat something and not bring it right back, as I have been for the last 10 months.
The trial wires are placed endoscopically and stay in place for 10-14 days. If it works I will have the permanent one placed into my abdomen.


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## Stardust_Fiddle

I hope that the neurostimulator proves effective in reducing your symptoms! I saw my motility specialist on Thursday, and I will be getting a nasal-duodenal feeding tube placed as soon as they can fit me in. They will place it via endoscopy and then admit me for a 24-hour observation period. If I can tolerate the formula, I will most likely have a permanent G/J tube surgically placed in the future. My doctor said that we have already exhausted all of my other treatment options and that there is no other alternative for me at this point. I am so underweight and malnourished from the gastroparesis that without intervention my body will completely shut down within weeks or months at the most. Scary stuff. :shifty-t:


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## Essieluv

Thinking of you Stardust! Please let us know how everything goes hun! I'm assuming that TPN isn't a good option for you since you are going to try tube feedings? Hugs and prayers coming your way!


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## kimmidwife

Thinking of you both stardust and little missy. I hope it goes well for both of you!


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## Stardust_Fiddle

Thank you! Essie, tube feeding is the better option for me because my immune system is compromised and TPN would be very risky. If tube feeding fails, I may not have a choice, but we are hopeful that the tube will be effective.


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## Essieluv

Ok, right that makes sense. Fingers crossed for you!


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## littlemissh

Stardust-I have a new nj tube placed by scope every 6-8 weeks. (since november)
You do get used to it though it does take some getting used to the stares you get from people.It has helped me improve my weight a little though my BMI is only 17 still, it was 15, so much better. You will have more energy once you get some nutrition.
I get my next one on tuesday. If the stimulator does not work or not enough I will have a jejunostomy.


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## Stardust_Fiddle

Six to eight weeks seems like the time frame that others have mentioned for changing the tube too. I hope to be able to progress to a g/j tube in the future so that I don't have to deal with the inconvenience of a nasal tube. What will a jejunostomy do for you if you have to have it? I hope that the neurostimulator works!


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## littlemissh

The surgeon isn't happy for me to have a GJ tube due to GD crohn's  (and duodenal perforation etc)and says that a jejunostomy tube is less easy to displace etc. It was always a decision between GJ and jejunostomy and they  feel the latter would be a better option for me.


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## Stardust_Fiddle

Ok, that makes sense. I have GD Crohn's as well, and the whole feeding tube situation does concern me a bit. I liked the idea of being able to vent the stomach with the g/j tube, though; I'll have to bring this up to my doctors.


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## littlemissh

I find the whole idea a bit daunting as far as permanent tubes go. Are they considering the Enterra gastric stimulator for you?


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## Stardust_Fiddle

Permanent tubes frighten me, but if it's going to keep me alive, I'll do it lol. I'm not a candidate for the stimulator because I don't have vomiting with my gastroparesis.


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## littlemissh

By the way, a good tip - Get some throat spray and vaseline to sooth when you first have it. I find that as the tube gets a little older it can be a bit uncomfortable and find sucralfate liquid is the best to sooth my throat/oesophagus.
Also I have adapted a ruck sack for my feed/pump etc so that it is less conspicuous to carry around.
Try and either get a spare pump or charge when you are sitting around at night. My electric cable reaches our toilet at home so I plug in overnight and just take it all to the bathroom when I need them.


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## littlemissh

Cross posted, I agree with it being worth it, I have just got used to it now having had it for so long. If it goes on much longer I would prefer a more permanent tube so that I can avoid 6-8 weekly scopes and a nasal tube.


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## Stardust_Fiddle

Thanks for the tips! I bought chloroseptic lozenges and Afrin the other day and will be getting a Neti pot too. I'm pretty sure that we have some vaseline around somewhere. I definitely want to get some sort of portable backpack, just for my own sanity, so that I can get out and about a little and don't go nuts being stuck in the house! 

I'm very impatient with medical procedures, and I will be much more inclined to go with a permanent tube if I have to keep having the nasal one replaced. Time will tell!


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## kimmidwife

Stardust fiddle,
Neti pots can be dangerous. I would not reccomend them. Also Caitlyn's gastroparesis doctor did not say you have to be vomiting to get the stimulator. She never vomits and they said she is a candidate. You may want to get another opinion on that.


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## Stardust_Fiddle

Interesting. From what I understand, the stimulator doesn't actually increase the stomach's contractions or make it work any better, it just decreases nausea and vomiting. I will bring it up with my doctor and get his thoughts.


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## kimmidwife

Some info about it,
It seems to work by stimulating the autonomic nervous system,
http://www.digestivedistress.com/GES


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## Stardust_Fiddle

Thank you!


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## UnXmas

I'm currently on TPN, but eating as well. I was put on it because my bowel perforated the other week, so I was on total bowel rest for a few days. You'd think TPN would be a solution for gastroparesis, but it's not - my doctors are worrying about the line going septic because I've got a bit of a temperature. It's very risky, and I don't think it would be a long-term option or something to use outside of hospital. I'm beginning to think there's no real solution. I couldn't tolerate NG feed, and having had this recent emergency surgery and scare, I really don't want any more tubes or anything of any kind inserted!


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## littlemissh

I can't tolerate NG feeds but tolerate NJ feeds quite well.

Sorry you've had such a rough time unXmas.


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## Stardust_Fiddle

Sorry to hear about your struggles, unXmas. I hope that things turn around for you! TPN would be an absolute last-case scenario for me because of the risks, including the risk of sepsis. I'm hoping that the nasal tube will work out and I'll be able to progress to the G/J tube. Just hope that it doesn't kick my Crohn's out of remission!


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## kimmidwife

Sorry to hear unxmas that you are going through this , sending lots of hugs and prayers your way!


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## kimmidwife

Bad GP morning. My daughter is on steroids for her Crohn's right now and of course it is making her hungry which leads her to eat more then normal which leads to vomiting! Not been a fun morning!


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## Stardust_Fiddle

I hope that things settle down for her soon! I've been delayed getting my feeding tube because of insurance red tape--waiting on them to approve or deny. :shifty:


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## littlemissh

Poor Caitlyn, it must be horrible to feel hungry and not be able to eat to get rid of the hunger pains. I still try and eat as I reckon my stomach may eventually completely lose its function if I don't, but it is horrible when you know you will end up vomiting.

Stardust, one of the good things about the NHS is that there is no worrying about insurance. That said, you have to get special approval for a lot of crohn's meds and also for the gastric pacemaker, though not feeding tubes and nutritional stuff etc, so i can sort of understand how you feel. I hope they get a move on because you will fade away. Are you still losing weight?


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## UnXmas

littlemissh said:


> Stardust, one of the good things about the NHS is that there is no worrying about insurance. That said, you have to get special approval for a lot of crohn's meds and also for the gastric pacemaker, though not feeding tubes and nutritional stuff etc, so i can sort of understand how you feel.


Sorry to go off topic, but which meds do we need special approval for on the NHS? I don't remember it ever being a problem, but then I've not been on all that many.


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## littlemissh

Any of the biologics, some investigations like double balloon endoscopy, gastric pacemaker. In some areas capsule endoscopy. Thats about it I think. I haven't had any issues with funding but if you are a borderline case going by the guidance it can be more difficult. 

The one I fear the most is that if you achieve full remission on a biologic, after a year the guidance says you have to stop it….despite there being about a 40% chance of relapse…scary.:ack:


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## Stardust_Fiddle

I would be incredibly upset if I had to stop biologics after achieving remission!

I think that I'm probably still losing a little weight. I stopped weighing myself because at this point the number isn't going to make a difference, and it's too depressing anyway. The nurse and doctor are very concerned though, and I'm rather afraid myself because being at such a low body mass, apparently my heart could stop at any time and my organs could start shutting down. I've been feeling worse, with more pain and more fatigue and weakness. I just want to sleep all day, yet I can't actually fall asleep. So annoying. I just hope that my insurance approves the tube, and soon, and that it works. :ybatty:


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## UnXmas

littlemissh said:


> Any of the biologics, some investigations like double balloon endoscopy, gastric pacemaker. In some areas capsule endoscopy. Thats about it I think. I haven't had any issues with funding but if you are a borderline case going by the guidance it can be more difficult.
> 
> The one I fear the most is that if you achieve full remission on a biologic, after a year the guidance says you have to stop it….despite there being about a 40% chance of relapse…scary.:ack:


Ah ok, I've not had biologics. The only problem I've had getting a capsule endoscopy is that I keep needing emergency surgery/ending up in hospital before they can get it done. It was ordered at the start of the summer - I heard nothing of funding problems, and I don't even want it! I've been tested so thoroughly lately and can't believe it will tell me anything new.

Let's hope they'll update their guidelines to keep biologics working for those that need them.


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## UnXmas

Stardust_Fiddle said:


> I would be incredibly upset if I had to stop biologics after achieving remission!
> 
> I think that I'm probably still losing a little weight. I stopped weighing myself because at this point the number isn't going to make a difference, and it's too depressing anyway. The nurse and doctor are very concerned though, and I'm rather afraid myself because being at such a low body mass, apparently my heart could stop at any time and my organs could start shutting down. I've been feeling worse, with more pain and more fatigue and weakness. I just want to sleep all day, yet I can't actually fall asleep. So annoying. I just hope that my insurance approves the tube, and soon, and that it works. :ybatty:


I hope the tube works for you. I'm incredibly underweight. My BMI was 10 at the start of the summer, and I've gained a few kilos since then. If it's any reassurance at all, I just underwent major, emergency surgery and am fighting off an infection, all at this weight, and my heart's doing fine, touch wood, and so are my other organs, so have some hope in the body's capacities for resilience. 

My experience with the NG feed was bad, but nowhere near the TPN disaster bad. If the worst happens, NG tubes are lower risk and easy to take out if needs be. My stomach just didn't like the feed for some reason, but I think that's very individual.

Now I'm back to gaining weight with just good old fashioned food and very happy to be doing so. Eating is easier since this surgery - I had problems building unbeknownst to me inside, and although I still have gastroparesis, I'm tentatively optimistic about gaining some weight now. I think there often are solutions out there if you can just find the right one(s) for you - I hope the tube will be that for you! I get weighed tomorrow morning and am anxious to know what it's going to say!


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## Stardust_Fiddle

UnXmas said:


> I hope the tube works for you. I'm incredibly underweight. My BMI was 10 at the start of the summer, and I've gained a few kilos since then. If it's any reassurance at all, I just underwent major, emergency surgery and am fighting off an infection, all at this weight, and my heart's doing fine, touch wood, and so are my other organs, so have some hope in the body's capacities for resilience.
> 
> My experience with the NG feed was bad, but nowhere near the TPN disaster bad. If the worst happens, NG tubes are lower risk and easy to take out if needs be. My stomach just didn't like the feed for some reason, but I think that's very individual.
> 
> Now I'm back to gaining weight with just good old fashioned food and very happy to be doing so. Eating is easier since this surgery - I had problems building unbeknownst to me inside, and although I still have gastroparesis, I'm tentatively optimistic about gaining some weight now. I think there often are solutions out there if you can just find the right one(s) for you - I hope the tube will be that for you! I get weighed tomorrow morning and am anxious to know what it's going to say!


Wow, I'm glad that you're able to gain some weight through oral intake! Our bodies are incredible, aren't they? Thank you for your encouragement. It scares me that I've been feeling so weak and tired, and I am hoping that I'll get the tube soon and that it will work and help me to at least feel a little stronger.


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## UnXmas

Well, my weight was the same this morning as it was last time I was weighed last Friday, and I'm quite pleased with that, given the circumstances. I've not been pushing myself to eat well past discomfort levels, not like I was when I was in hospital to gain weight, so I'm happy that I can at least maintain without excessive discomfort. I'm still finding eating is gradually becoming easier, so hopefully soon I'll be comfortable eating a little more and can start gaining.

The NG feed gives you all the vitamins and things you need, so it should make you feel healthier. For me, and I think this is true for everyone having NG feeding, they start you on quite a small amount - I began by only getting a couple of hundred calories per twenty-four hours from it, as it's supposedly easier on your system that way. In particular, if you've not been able to eat or keep down much for a while, your stomach may not be used to food. Also, there may be a concern about refeeding syndrome if you've had very little nutrition; people are usually given certain supplements to help prevent this when starting feeding - do you know if your doctors are planning this for you? It wasn't an issue for me, as although I was underweight I was still eating a fair amount, but my doctors prescribed me the supplements anyway. But yeah - don't worry if you don't get immediate results as the amount of feed given at first is very small, and will probably be gradually increased over a couple of weeks depending on how well your body's coping with refeeding.


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## littlemissh

Hi Un Xmas, sorry your weight has stayed the same. Have you been tried with a nasojejunal tube, as it bypasses the stomach you may well find it works for you.

I have never had a BMI as low as 10, I thought I was skinny enough when it was 14!! I hope you start putting some weight on soon. For me it was the NJ tube which has helped, though been a slow process as every time I get really sick and end up back in hospital I lose weight again. But my BMI on NJ feeding for nearly 12 months is now 17, so much better. My dietician wants it to be a minimum of 20, so a way to go yet.


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## UnXmas

I've not had an NJ tube - I want to try being tube free though!


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## Stardust_Fiddle

My tube will be a nasal-duodenal, so it will bypass my stomach, thankfully. I can't tolerate much orally, so an NG tube would just compound the problem in my case.


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## kimmidwife

Stardust,
Any update on the tube approval?
Caitlyn was switched over to entocort and is doing a little bit better. She does eat just very small amounts. She also keeps losing weight.


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## Stardust_Fiddle

I'm glad that Entocort is working for her. It did nothing for me. I found out yesterday that my PCP's office didn't fax the paperwork on Friday like they were supposed to, but rather didn't send it until Tuesday. I probably won't hear anything now until next week because the motility nurse is not in tomorrow.


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## Essieluv

littlemissh said:


> The one I fear the most is that if you achieve full remission on a biologic, after a year the guidance says you have to stop it….despite there being about a 40% chance of relapse…scary.:ack:


I know that in the US we don't have this regulation. I can't imagine how frustrating and scary that would be! I guess I'm actually thankful for the American healthcare system for once, ha.


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## Stardust_Fiddle

Hope this finds you all doing as well as possible! Due to insurance nonsense I ended up having to go to the Cleveland Clinic instead. I will be having an NJ (nose to small intestine) tube placed on Monday and will be admitted to the hospital for a few days to make sure I can tolerate the formula and to try to stabilize me. I have "severe protein-calorie malnutrition" and am quite anemic and thus also have to have a peripheral catheter placed in my arm for iron and nutrients. If I tolerate the formula, I will have the feeding tube for 2-3 weeks and then--probably in early November--have a permanent surgical jejunostomy, and shortly after it is placed I will have it made into a "button" so that the tube won't be sticking out of me so far. If I can't tolerate the formula, I will instead have to go on TPN; hopefully this won't be necessary because it is very risky. The doctor is hopeful that with the supplemental nutrition from the feeding tube and jejunostomy I will be able to get back to a healthier weight over time. The surgery will be as non-invasive as possible, but there is always the chance that it could kick my Crohn's out of remission, and we are hoping that that won't happen. Fortunately, there is a Starbucks on the campus, so if I go MIA during my hospital stay, the nurses will know where to find me!


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## UnXmas

Good luck Stardust_Fiddle! I hope this brings you better health!


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## littlemissh

Good luck stardust, I really hope you can tolerate your feed and that you can avoid TPN.
Just be aware what feed they are using. I cannot tolerate the usual feeds and do much better on elemental (028extra)or semi-elemental feeds (perative) as they are 'pre-digested'. So it is worth having a discussion with your dietician whether to start you on elemental. I had to decant the cartons into a flo-care container but it was no big deal. My dietician is brilliant.

I had my temporary pacing wires in on tuesday, it wasn't as straight forward as it should have been (won't bore you all with the details) but it seems to be having an effect. There was no change for 2 days and I was panicking but my vomiting frequency has reduced and nausea much less. I am not convinced I will manage the 2000 calories to avoid a jejunostomy though. Still, its early days. I meet with the surgeon in 10days to have it taken out and decide what next.


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## Stardust_Fiddle

Hi, all. I hope that you all had a nice Thanksgiving! I realized that I haven't updated on here for a while. I couldn't tolerate the NJ tube and threw it up repeatedly within hours of getting it, so I ended up having a jejunostomy and getting a J-tube. Long story short, we discovered that, in addition to gastroparesis, I have significant intestinal dysmotility which prevents me from getting more than 120 mL of formula per day via my J-tube. Thus a couple of weeks ago I had a Hickman catheter surgically placed and started TPN. I'm also still running my J-tube as much as I can tolerate to keep my intestines working. Ideally, I would like to be able to eventually get off of TPN, but it doesn't look promising so far. My electrolytes keep crashing--my latest ER trip was Wednesday by ambulance--so I'm waiting to hear from my doctor about whether they need to tweak my TPN formula. Meanwhile, my stomach and intestines are wreaking havoc. :ybatty: My main goal is to stay out of the hospital, as I seem to be on a revolving door there!


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## littlemissh

It sounds like a rocky road for you, I hope you are feeling better.

How painful was it having the jejunostomy? Did it take long for the pain to settle and you could get back to normal activity?


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## Stardust_Fiddle

The jejunostomy was rough on me. I was in a lot of pain for several weeks and was hospitalized for 10 days after the surgery, but I've only taken Tylenol because my body can't tolerate pain meds. It's actually still sore, which was compounded by the fact that I recently had it converted into a mic key button; they literally ripped the old tube out--no sedation or numbing--and my body is still recovering from that. All of this is not helped by the fact that I'm underweight and on immunosuppressants, either, so for someone else it might not be nearly as bad. Are you having the jejunostomy?


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## littlemissh

I'm not sure, but it is looking increasingly likely. 
I had the pacemaker fitted 3 weeks ago,which has helped with the vomiting so only sick a couple of times a day. Unfortunately I had complications straight after surgery and had to go back to theatre and then ITU for sepsis.
I eventually got home and then developed pneumonia which I am now on treatment for though now back out of hospital. They also found a mass in my lung which they are discussing on monday what they feel it is and what should be done.
As a result of all this I have lost weight since my pacemaker surgery and NJ feeds cut right back. I am hoping they give me more time to try and rectify my weight as I can't face another surgery right now.
Was you jejunostomy done under GA or local?


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## Stardust_Fiddle

Ugh, I'm sorry that you've been through the wringer, too! I completely understand about not wanting more surgery at the moment. If you can afford to wait (if your BMI isn't too low, etc.), I would before going under the knife again. I wish I had had time to wait between my J-tube and TPN. My jejunostomy was performed laparoscopically, so I have four incision points in my abdomen along with the stoma. What they didn't tell me is how painful it would be and how much it would compromise my ability to do anything because you use your abdominal muscles for just about every move you make. I still have trouble bending over, but the pain does get better over time...it just takes longer than I'd like.


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## littlemissh

My BMI is much better than it was as I have had 12 months NJ feeds so now 17. I am only just getting less pain from the pacemaker surgery- a 10cm incision where the pacemaker unit was inserted into the abdo and then the smaller 2cm incision where the laparoscope went in. It hasn't been helped being opened up again and then having a cough from the pneumonia. Honestly I sound like an old woman.
To have some more holes right now fills me with dread. I think that the priority is finding out what the mass in my lung is right now.


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## littlemissh

And to top it all my portacath isn't working properly so I am on the list to have that replaced too. They asked if i wanted a Hickman instead but I prefer the buried port rather than the visible line.


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## Stardust_Fiddle

I hope that your issues resolve and that the mass on your lung can be treated non-surgically and effectively. I'm not familiar with the portacath; the Hickman is nice, but it would be better if it wasn't tunneled under my skin, I think. I'm allergic to the adhesives used to cover it and am still trying to find something that doesn't cause itching and a rash. It's definitely a pain to care for, but the benefit is being able to use it for blood draws and saving my veins! ;-)


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## littlemissh

The portacath is totally tunnelled and mine goes into my internal jugular. It can be used to take blood and give infusions. It was put in for me as my veins have been wrecked. 
the one downside to the portcath is that you have to pierce the overlying skin every time you put a new needle in - once a week if in all the time or every time you access the port if not used daily. They have a lower infection risk than Hickmans which is why they chose it for me as I am so prone to getting sepsis.
I wouldn't be without it and it has saved many stabs over the last year.


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## Stardust_Fiddle

Neat...I'm glad that it works for you! Sepsis does concern me, although there are lots of precautions being taken to prevent me from getting an infection, and I'm super careful and paranoid, so hopefully I'll avoid that. :-/


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## kimmidwife

Hi star dust and littlemissh,
Sorry to hear you are both going through so much right now. Littlemissh sending prayers that the lung thing is benign. I don't know if you are taking LDN but there are some studies showing that it helps prevent cancer and even treat it so it might be a good idea to start it. Also alpha lipoic acid and D, L phenylanlinine.
We too have had a rough few weeks. Both Caitlyn and I were in the hospital. I do t k ow if I shared that I also have gastrporesis. Mine is idiopathic though might be caused by my nerve disorder. Mine was always more mild then Cailtyns and then three weeks ago I got super I'll and was not able to stop vomiting. I ended up in the hospital for almost a week and they could not figure out why it suddenly got worse. The hospital was awful and did almost nothing for me. I am seeing a new GI a who is fantastic and is determined to figure out what is going on. Meanwhile Caitlyn also became very ill. Her crohs flared really bad. We are still working on getting it under control. Hopefully she will be starting cimzia this week. We had some issues with insurance approval and the. The pharmacy dropped the ball but hopefully it is straightened out and she will get it this week.
That is it with us. Sending prayers for better days for us all!!!!


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## Stardust_Fiddle

Kimmidwife, I'm so sorry to hear that both you and Caitlyn are struggling right now too. I hope that the Crohn's comes under control and that Cimzia proves effective and quick-acting, and that your gastroparesis symptoms settle down. It seems like the weather change is affecting everyone with chronic illnesses; hopefully you're just experiencing a temporary flare and your symptoms will subside. I'm glad that you have a good GI who is willing to work with you; that definitely helps.


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## kimmidwife

It really does help having a good GI doctor. How are you doing today?


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## Stardust_Fiddle

I'm flaring; my digestive system has gone into "shut-down" mode, so I'm just waiting for things to start moving again. :ybatty: How are you and Caitlyn doing this weekend?


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## kimmidwife

Both of us are so so. Wishing for better days for all of us!


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## DustyKat

*Article and podcast - Gastroparesis*

*Article:*



> *Overview*
> Gastroparesis literally translated means “stomach paralysis”. Gastroparesis is a digestive disorder in which the motility of the stomach is either abnormal or absent. In healthy people, when the stomach is functioning normally, contractions of the stomach help to crush ingested food and then propel the pulverized food into the small intestine where further digestion and absorption of nutrients occurs. When the condition of gastroparesis is present the stomach is unable to contract normally, and therefore cannot crush food nor propel food into the small intestine properly. Normal digestion may not occur.
> 
> *Full Article*
> http://patients.gi.org/topics/gastroparesis/#tabs2


*Podcast:*

http://patients.gi.org/topics/gastroparesis/#tabs4

You will see an option to link to the gastroparesis podcast only.


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## kimmidwife

Thanks dustykat!!!


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## Maya142

My 18 year old daughter was just diagnosed with gastroparesis a few weeks ago. She started erythromycin a few days ago and it seems to be helping.

 She's continuing to lose weight though. She has an NG tube (for Crohn's related weight loss) but now even that makes her nauseous and she won't even consider an NJ tube (which is what her GI recommended). Any suggestions for increasing her calories? Are there certain foods that are easier to tolerate?


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## UnXmas

Getting more of her calories from liquid may help your daughter, Maya, as liquids generally go through the stomach faster than solids. But I would check with her doctors to make sure any diet changes are safe for her. Is she having liquid supplements like Ensure? These can be helpful, but because they have fat and protein in them, they can be filling, as can milkshakes and ordinary milk. Fruit juices and energy drinks may be better in that respect, as they're mainly sugar/carbohydrate based.


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## kimmidwife

Maya,
I just sent you a PM.


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## Maya142

Ensure made her nauseous too unfortunately. She's supposed to get Neocate via her NG tube - we're going to see if she can tolerate her NG tube at a very slow rate.


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## addyp

Just wanted to say hi. My hubby was diagnosed with crohns in jan. We're trying to learn as much about this as possible


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## kimmidwife

Hi Addyp,
Does he also have gastroparesis?


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## addyp

Hi kimmi I'm not sure. He's been diagnosed with crohns. They did a colonoscopy and it's in the lower intestine. What is gastroparesis?


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## Muppetgirl

Maya142 said:


> My 18 year old daughter was just diagnosed with gastroparesis a few weeks ago. She started erythromycin a few days ago and it seems to be helping.
> 
> She's continuing to lose weight though. She has an NG tube (for Crohn's related weight loss) but now even that makes her nauseous and she won't even consider an NJ tube (which is what her GI recommended). Any suggestions for increasing her calories? Are there certain foods that are easier to tolerate?


I'm sorry to hear your daughter has another battle on her hands. The AGMD has a couple of leaflets about diet and gastroparesis http://www.agmd-gimotility.org/ed_library.htm although you've probably come across a lot of the advice already.

Personally I have found changes to _how_ I eat help as well as _what_ I eat. The small and frequent side is well known, but I didn't realise till I read about it that it's better earlier in the day. I also avoid liquids after solids for at least half an hour as although my instinct is to 'wash it down' to decrease the discomfort, my stomach cannot cope with the extra volume at all. I'm not sure if that's just me though. 

Recently I've had small portions of rice crispies (without milk or liquid). Is a way a getting a small bit of vitamins and minerals and kinda surprising given they are mostly air! To be honest though these things only help on the day-to-day side and just a little. My weight has continued to drop. I hope she finds a helpful treatment.


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## Maya142

> Personally I have found changes to how I eat help as well as what I eat. The small and frequent side is well known, but I didn't realise till I read about it that it's better earlier in the day. I also avoid liquids after solids for at least half an hour as although my instinct is to 'wash it down' to decrease the discomfort, my stomach cannot cope with the extra volume at all.


This is wonderful advice (that I've never heard!), thank you!! We'll try that.


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## kimmidwife

Addyp,
Gastroparesis is a secondary disorder where the motility in your GI system does not function properly. It causes severe nausea and vomiting and usually severe constipation.


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## Keralin

I was just diagnosed with grade 2 (initially grade 3) gastroparesis last week, after two hospitalizations this month.  I started taking Reglan (metoclopramide) 4 times a day, and take zofran as needed for nausea.  Not sure if it's helping yet, but apparently it has a cumulative effect.  Unfortunately, the Reglan is making my lower GI tract stuff more...uh, cranky.  But if the upside is not vomiting 12+ times per day, I'll take the bad with the good.

Does anyone have any theories as to how Crohn's is connected to Gastroparesis?  Or do you think they're two coincidental, yet separate entities?  I suspect being on antidiarrheals for so long may have been the impetus in my case, or maybe neuropathy from nutritional deficits.


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## kimmidwife

Keralin,
Firstly you have to be very careful with reglan. Did they warn you about the possible effects and that it can cause something called tardive dyskinesia? Please google that and be aware of the possible warning signs of it as if not recognized and the medicine stopped quickly it can become permanent.
I didn't think it was safe to take both zofran and reglan together? I would double check with your doctor about that. From what I understand about 5% of people with Crohn's get gastroparesis. That is the recorded number though it may actually be a lot higher then that. They think the Crohn's messes up the nerve function of the gut.
I hope you are feeling a little better. Keep us posted.


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## Keralin

Thanks for the input 

My doctor did warn me about the associated possible drug reactions, but said although it is a risk, it's rather low as he doesn't intend to keep me on it for longer than a month.  I will most likely be switched to something else at my next follow-up.  But I feel sooo much better in terms of being able to keep the contents of my stomach IN my stomach.  I'm still having problems between doses, but it's not a magic pill.  I'm extremely thankful for the relief I am getting.

I did ask about the zofran, and he said it was okay to continue taking both.  I initially thought I was supposed to discontinue the zofran as well.  I guess even though they're in the same class, they act on different chemicals/hormones.  I try to avoid the combo unless completely necessary because reglan alone knocks me on my butt.  Add zofran to it, and it may as well be anesthesia. Ha!

My husband is a little miffed that I decided to take the reglan despite the warnings, since he's also concerned about the possible side effects.  I don't like the idea at all, but when the alternative is being in the hospital...meh.  He's overseas right now, so he doesn't get to experience all of this fun first hand.  I'd like to take a vacation from myself too!:wink:


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## kimmidwife

Keralin,
 I totally understand! I am glad to hear he only plans to keep you on it a month. Look into Domperidone. I tookm that for two years and it really helped me. The one thing with it is make sure you get a baseline EKG and then repeat them every three months. It is very rare but it can cause a change in your heart rythm, I had a change in mine and so had to stop it. Unfortunately my doctor was not on top of that and I didn't find out right away about the change and so by the time I found out the change was permanent though luckily it is not a harmful change.


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## Muppetgirl

Keralin said:


> I was just diagnosed with grade 2 (initially grade 3) gastroparesis last week, after two hospitalizations this month.  I started taking Reglan (metoclopramide) 4 times a day, and take zofran as needed for nausea.  Not sure if it's helping yet, but apparently it has a cumulative effect.  Unfortunately, the Reglan is making my lower GI tract stuff more...uh, cranky.  But if the upside is not vomiting 12+ times per day, I'll take the bad with the good.
> 
> Does anyone have any theories as to how Crohn's is connected to Gastroparesis?  Or do you think they're two coincidental, yet separate entities?  I suspect being on antidiarrheals for so long may have been the impetus in my case, or maybe neuropathy from nutritional deficits.


Hi Keralin, sorry you had those hospitalisations. As Kimmidwife touched on there are nerve changes. These have been found in gastroP as well as crohns. Specifically there is a decrease in nerve cells containing tyrosine in gastroP and this is thought to play a central role in the delayed gastric emptying. A reduction in tyrosine containing nerve cells has also been demonstrated in crohns. So I guess it's possible that this is the shared factor for some folks but I think we still have quite a way to go in fully appreciating the changes that occur in enteric nervous system with GI diseases. Obviously not everyone with one has the other so there are other variables, and there are other motility disorders that can occur in crohns which can lead to gastoP. 

I don't know on the antidiarheal front, I would hope any effect was temporary. I personally do not get along with Reglan but I'm glad it's helping you out. Good luck.


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## Farmwife

Hi everyone, 
We're in a dilemma, Grace has clear scopes which is great but now her stomach is not working properly...... again.
She always had so much going on that her slow mobility was chalked up to the disease

So now we're wondering about gastropresis.
However  symptoms come and go. But each time out comes back it stays longer and longer. She also had nausea, cramping and bloating

Has anyone else presented like this?


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## UnXmas

Farmwife - I have gatroparesis, and my symptoms do vary from day to day (or hour to hour). I'm constently bloated though, that doesn't change. I get incredibly full with "normal" amounts of food, though the severity of fullness changes. I've not heard of cramping being particularly indicative of gastroparesis, I think fullness is more common. I also have GERD, and a lot of symptoms overlap. If other things - Crohn's flare, etc. - have been ruled out, it may be easiest to treat the symptoms without worrying too much about the cause. But on the other hand a gastric emptying study is an easy, painless (but time-consuming) test.


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## Maya142

My daughter mostly had symptoms after meals (nausea, fullness, stomach pain). Unfortunately, the longer she goes without eating, the better she feels (so she has lost a LOT of weight - just been admitted and an NJ tube has been placed). M's symptoms got bad in early January which was when she was finally diagnosed and they have just gotten worse and worse in the last two months.

The test was not bad at all Farmwife - M was very afraid she would throw up but they gave her some Zofran. She had to eat eggs and toast in 10 minutes. She watched movies through the whole test - she really liked that! The test is long though - took 4 hours.


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## Muppetgirl

Mine started out variable, although that may have been because I was still eating a wide range of foods at the time and some probably caused more trouble than others. My intake is far more restricted now. Early saiety and nausea definately came first, then fullness. Nowadays I experience crazy fullness all the time regardless of what it is or how small the portion is. I agree that with any other GI problems going on it's likely to have an influence and be harder to differentiate. Go for the emptying test if it's not been done, it'll be helpful to her doctors as well as you.

Maya - sorry to hear about your daughters admission. I hope it will help her.


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## Farmwife

Thanks everyone.
Grace has been on PPI's forever. Still she has stomach issues.
I'll wait it out a bit more...... if possible. 
She's been thru a lot and we all need a break.
But yes, she gets full easy but needs and ask for small snacks all the time.
She just switched to kids Boost and it seems to help.


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## Muppetgirl

Hi all, I was wondering what form do those of you still using the oral route usually take your medications in? Do you find liquid meds better? I keep meaning to ask my GI about this but keep on forgetting. I'm particularly interested in gastroparesis meds but also would like to know about meds you take for other things.


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## kimmidwife

Muppettgirl,
    I have to take mostly liquid meds or capsules. My daughter can still take some tablets. I think it varies on the severity of the GP.


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## Maya142

For gastroparesis my daughter takes the liquid form of erythromycin. All other meds are tablets or capsules.


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## Muppetgirl

Anyone got any tips on their own or their kids experience with complete elemental feeds? I cannot get much down and it makes me gag partly because of the consistancy. I tried to move to unflavoured but that's slightly worse. The GP is not the sole reason I need the feed and my rapid weight loss won't stop. I am so weak now and utterly miserable.


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## Stardust_Fiddle

Do you have a feeding tube?


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## kimmidwife

Muppettgirl,
It sounds like you need a feeding tube if you don't have one. They just started my daughter on TPN through a PICC line.


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## littlemissh

I can't drink it and even before gastroparesis had an NG then NJ tube to take it. I am currently back on full elemental via my tube as my weight has plummeted.
I suggest you ask for a tube- if NG you can bolus them in, via NJ you will probably need a pump.
Hope things improve for you.


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## Muppetgirl

Thanks. I feel stuck. My GI at my local hospital is talking about an NG tube, but I don't think I have come across gastroparesis patients that can tolerate a gastric (rather than jejunal) tube feed. Am I wrong? I don't have the best rapport with this GI but I'm having a hold up funding wise with the GI at my specialist centre. I am really scared of them making it worse. I have visions of them barrelling down feed into my stomach and me being violently ill. Admittedly I think I am anxious about tubes period. So that's not helping. I was hoping I would have more success with the elemental (oral) feed.

littlemishh - I hope going back to a full elemental feed via your tube helps you.

kimmidwife - I'm sorry about your daughter. I hope it gives her the nurtrients she needs.


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## Maya142

My daughter had an NG tube for a while but it made her extremely nauseous (it even made her throw up). You could try a very slow rate and see if you tolerate it but then you'd have to be hooked up for a long time to get all the calories you need.

She then had an NJ tube inserted and though she tolerated that with no problem at all (NO nausea!!), she hated the feeling of it (it was thicker than the NG tube and of course had to be kept in all the time) and eventually pulled it out. Now we're talking about a GJ tube.

Good luck!!


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## kimmidwife

My daughter is going for another gastric emptying tomorrow. The last one was almost a year ago and the doctor wants to evaluate what is going on with her now.


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## UnXmas

The results of the gastric emptying study I had late last year have been lost. 

On the bright side, at least it's a test I won't mind repeating that much. If I was told they'd lost the results of a test like, for example, the small bowel MRI I had where I had to drink a litre of vile contrast, then I would be annoyed.


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## kimmidwife

Unxmas, 
That is terrible! Sorry to hear!


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## Stardust_Fiddle

I would definitely go for the NJ tube first. One word of advice, though: ask that you be given one *without* a "bridle." I had an NJ tube inserted last fall and it had a bridle, so it was almost like a prong; it was in both sides of my nose and it was miserable. I threw it up after a few hours and ended up having a J-tube surgically placed instead. Unfortunately, I then found out that I have intestinal dysmotility as well, and the J-tube never worked for me as a result, so I am now on TPN. I actually had my J-tube removed yesterday, and I'm so glad to be rid of it! 

Anyway, sorry for the novel, but I just wanted to offer some advice and caution based on my own experiences so that you don't have to go through the same thing!


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## UnXmas

Stardust_Fiddle said:


> I would definitely go for the NJ tube first. One word of advice, though: ask that you be given one *without* a "bridle." I had an NJ tube inserted last fall and it had a bridle, so it was almost like a prong; it was in both sides of my nose and it was miserable. I threw it up after a few hours and ended up having a J-tube surgically placed instead. Unfortunately, I then found out that I have intestinal dysmotility as well, and the J-tube never worked for me as a result, so I am now on TPN. I actually had my J-tube removed yesterday, and I'm so glad to be rid of it!
> 
> Anyway, sorry for the novel, but I just wanted to offer some advice and caution based on my own experiences so that you don't have to go through the same thing!


My experiences have been that the NG was bad, but TPN was far, far worse. Sometimes there just aren't any good choices, you just have to hope you can find the right solution for you. I've not  had an NJ tube though.


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## Stardust_Fiddle

I would love not to be on TPN, but I don't have a choice, unfortunately. It has caused some more chronic issues, but at least it has brought my weight up. :ybatty:


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## Maya142

> I would definitely go for the NJ tube first. One word of advice, though: ask that you be given one *without* a "bridle." I had an NJ tube inserted last fall and it had a bridle, so it was almost like a prong; it was in both sides of my nose and it was miserable. I threw it up after a few hours and ended up having a J-tube surgically placed instead. Unfortunately, I then found out that I have intestinal dysmotility as well, and the J-tube never worked for me as a result, so I am now on TPN. I actually had my J-tube removed yesterday, and I'm so glad to be rid of it!


My daughter's NJ tube was not that bad - it didn't have a bridle or anything like that. It was like an NG tube just thicker. In the 10 days she had an NJ tube she gained two pounds (which is great for her!) so we know an NJ and so J tube would work for her.

A bridle sounds awful!


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## UnXmas

I think I'm biassed against TPN because the one time I had it I got an infection (sepsis). Though doctors have told me TPN is always the last resort because of the infection risk (the TPN contains sugar, which bugs like, and is in contact with the air and your bloodstream).

I managed to lose weight on TPN and I lost weight with an NG. But I'm gaining now with no tubes and just food. It seems it's impossible to know what will work sometimes.


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## UnXmas

I'm sorry if it sounded like I'm criticising anyone (or anyone's doctors) for using TPN, it's just hard once you've had a bad experience to not warn others about it. But I know that's not very helpful of me when I don't have any better ideas. Just watch out for signs of infection (raised temperature being the main one) if you're on TPN.


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## kimmidwife

Unxmas,
 My daughter's doctor is actually not pro TPN and if she had been on call she would not have let them put the PICC line in and start TPN. But since it is already done I don't want them to discontinue it so quickly. At least let it build her up a bit over a few weeks.


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## Muppetgirl

I'm all too aware my CIPO could present problems with a NJ/J tube as well, but I figure bypassing one organ that refuses to work properly would be better than bypassing none. Unfortunately I don't think the local GI agrees. I have to make a decision whether to give in to the local GI now or wait to go back to the experts who I trust (but at a lower weight). It sucks that J tubes are thicker. Is it because they are more prone to getting blocked?


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## Maya142

Yes, they do get blocked more easily and of course are much longer than NG tubes. We were given a "clog zapper" kit.


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## Muppetgirl

kimmidwife said:


> My daughter is going for another gastric emptying tomorrow. The last one was almost a year ago and the doctor wants to evaluate what is going on with her now.


It sounds like she is having a really rough time :hug: I hope it goes ok for her tomorrow. Let us know how she gets on.


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## UnXmas

They finally found the results of the gastric emptying scan I had last December. I now have an official gastroparesis diagnosis. My emptying of solids was very delayed. My emptying of liquids only slightly delayed. So I guess an all-liquid diet may help me to get in more calories and gain weight, though I wouldn't stay on it long term. It's nice to have some objective confirmation.


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## kimmidwife

Glad they found it and you finally have some anwswers!


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## Muppetgirl

Glad you got the confirmation. I hope they give you some support with any changes you want to make. On the solids side I'm guessing you've been told before that avoiding fibre and fat is best for gastroparesis? Obviously the latter is difficult when your BMI is low. Which seems to be the perpeptual bind a lot us are stuck in


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## UnXmas

I'm probably eating quite a bit of fibre at the moment. I hadn't been able to tolerate much at all for years, but since my last stoma surgery fibre no longer gives me issues so I've been enjoying eating things like fruit and nuts again, and yes, fat seems to be a necessity when trying to gain weight. I do have a lot of fluid and semi-fluid foods though, which must help. I have a lot of Ensure, but for a long time I've been naturally drawn to things like yoghurt and ice cream, because they don't leave me feeling so full. So yes, it's hard to find a balance some times.


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## Stardust_Fiddle

It's always a relief to get some answers!


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## Maya142

Wanted to update on my daughter. She lost a total of nearly 20 lbs (which is a lot for someone who is 5'2 and underweight to begin with) after being diagnosed with gastroparesis in January 2015.

They admitted her to try an NJ tube again and this time M has stuck with it even though it is uncomfortable. She's now had it for 3 weeks and has gained 7 lbs, which is incredible!!

Just wanted to post, so you all don't only hear horror stories about NJ tube


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## Stardust_Fiddle

That's great! I'm so glad that it's working for her!


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## kimmidwife

Maya,
That is amazing news! Very happy to hear it!


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## ronroush7

I have had  Crohn's for 25 years but think I might have gastroparesis.  Sometimes, I feel like it is extremely difficult to empty myself.  I am going to the GI tomorrow concerning some pain I am having but will ask about this.


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## my little penguin

Gi thinks Ds has gastroparesis on top of crohns and arthritis
He is down to 80-90% Peptamen jr with very little solid foods
When he does eat makes him very ill.
He ate a few grapes and crackers yesterday at lunch 
And two slices of peanut butter toast at dinner 
Thankfully he can still drink all of his shakes for his calorie
Gastric emptying test is next week


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## ronroush7

my little penguin said:


> Gi thinks Ds has gastroparesis on top of crohns and arthritis
> He is down to 80-90% Peptamen jr with very little solid foods
> When he does eat makes him very ill.
> He ate a few grapes and crackers yesterday at lunch
> And two slices of peanut butter toast at dinner
> Thankfully he can still drink all of his shakes for his calorie
> Gastric emptying test is next week


Wishing the best.


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## my little penguin

http://www.practicalgastro.com/pdf/May15/Update-in-Pediatric-Gastroparesis.pdf

Latest paper on pediatric gP



> There is a robust body of evidence for the etiology and management of adult gastroparesis, but limited in the pediatric population. Pediatric gastroparesis is usually overlooked and can remain untreated for a long period of time. The aim of this review is to provide the most up to date evidence on the spectrum of pediatric gastroparesis, emphasize the differences from the adult setting as well as extensively address management approaches and treatment recommendations.
> 
> Gastroparesis is characterized by delay in gastric emptying in the absence of mechanical obstruction. The etiology and management of gastroparesis have been well studied in adults, but limited in the pediatric population. Most common identifiable etiologies of pediatric gastroparesis include: post-viral illness, drug side effects, post-surgical complications, diabetes mellitus, and mitochondrial disease. The most common symptoms are usually age-dependent. Nausea and abdominal pain are more common in older children and adolescents, while vomiting is more common in younger children. The gold standard for diagnosing gastroparesis remains gastric emptying scintigraphy, although normal values in children are limited. Treatment includes dietary modifications, pharmacotherapy, and gastric electrical stimulation, maintenance of nutrition, attention to glucose control, and psychological aspects.


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## Maya142

Wanted to update - my daughter now has a GJ tube and is doing well with it. We had a rough couple months after it was placed - she had some infections and it was quite painful. She's also had granulation tissue that was treated with silver nitrate (worked great!).

Now she's doing very well - her weight is up, she has gained around 23 lbs  (from 82 lbs to 105 lbs) since the summer. The tube doesn't bother her anymore and I'm so grateful for it! She is still on feeds but she is eating more and tolerating more food (though fiber still really bothers her). 

Hope everyone else is doing well!


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## ronroush7

That is great.


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## kimmidwife

Ronroush and MLP wishing you both luck in this. The good news with GP is that it can improve over time. Caitlyn's has improved significantly since diagnsosis. We have no clue why and the doctor Said they don't know exactly why but sometimes in crohns as the inflammation decreases the Gut can function better and that could be why.


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## ronroush7

Thanks


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## my little penguin

Add ds to the list
Borderline delayed gastric emptying results for solids
But given his food limitations and intake
Gi is strongly recommending we trial erythomycin 
To find the sweet spot for emptying vs stomach cramping
Also avoid fats and complex carbs
Small bites and chew a lot


Not sure where I am feeling about this but glad it's a possible answer


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## kimmidwife

MLP,
 I am so very sorry to hear this. Erythromycin did not work for Caitlyn and gave her horrendous stomach pain. I hope it works for him. If not look into domperidone. It works great has few side effects but has a very rare incidence of causing a change in the heart rhythm so if he takes it he will need an EKG every three months. The change is reversible if it happens and it is caught right away and he is then taken off it. You know I have mild GP also I took domperidone for two years and had a change in my heart rhythm was taken off it and one year later heart rhythm is back to normal. The doctor told us it is a very rare side effect and of course I am the rare side effect queen lol. Thankfully I have a slight improvement in my emptying time and am just learning to live with it.


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## my little penguin

From my other kiddo different brands of erythomycin have different effects
We are trying the same brand E.E.S granules that seemed to cause less issues
And the Gi is titrating up ds dose slowly


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## kimmidwife

Glad to hear. Fingers crossed that it works for him!!!


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## Maya142

We also have M on EES granules. She has done well with Erythromycin but cannot take it at every meal because it increases her reflux. So she takes it once a day with dinner, which is her "bigger" meal. 

We tried Domperidone and M had bad abdominal cramping  and diarrhea with it - it seemed to speed up her emptying too much! We were not able to get it in a lower dose but are thinking of trying it again since she has gained 20 lbs.

Sending hugs MLP :ghug:.


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## SharonLBach

I am not part of this group but have had Crohn's Disease most of my life. I am 61 year of age. I have never tried a support group. I read several of the s "stories" of what people are going through. It upsets me that so many new tools are available for medical practitioners to do a better job yet so many are still suffering long periods of time just to find out what is wrong with them. These stories break my heart even though there is part of my history in each and every one of them. I'm not sure this is right for me but if I could help even one person get answers easier than I did over the years, that would make me feel better.


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## ronroush7

Thanks for your attitude.


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