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04-28-2015, 07:54 PM   #151
Muppetgirl
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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?
04-28-2015, 07:56 PM   #152
Maya142
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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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diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
04-28-2015, 07:59 PM   #153
Muppetgirl
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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 I hope it goes ok for her tomorrow. Let us know how she gets on.
06-12-2015, 07:25 AM   #154
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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.
06-12-2015, 12:33 PM   #155
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Glad they found it and you finally have some anwswers!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
06-12-2015, 08:51 PM   #156
Muppetgirl
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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
06-13-2015, 05:18 AM   #157
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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.
06-13-2015, 09:57 AM   #158
Stardust_Fiddle
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It's always a relief to get some answers!
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Conditions: gastroduodenal Crohn's disease; chronic SIBO; bile reflux; gastroparesis; intestinal dysmotility; hiatal hernia; hypogammaglobulinemia; IBS; chronic migraine; fibromyalgia; sensory processing sensitivity; Raynaud's; congenital cataracts
Current treatments: Humira biweekly, Azathioprine 50 mg once daily, Xifaxan 550 mg daily on alternating weeks, Omeprazole 20 mg, Cymbalta (for pain), VSL#3 Probiotic, Iberogast, Remeron, Zofran; permanent TPN
06-15-2015, 01:10 AM   #159
Maya142
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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
06-15-2015, 09:44 AM   #160
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That's great! I'm so glad that it's working for her!
06-15-2015, 03:53 PM   #161
kimmidwife
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Maya,
That is amazing news! Very happy to hear it!
12-09-2015, 11:21 AM   #162
ronroush7
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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.
12-09-2015, 12:26 PM   #163
my little penguin
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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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12-09-2015, 01:31 PM   #164
ronroush7
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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.

12-09-2015, 06:11 PM   #165
my little penguin
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http://www.practicalgastro.com/pdf/M...troparesis.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.
12-09-2015, 06:37 PM   #166
Maya142
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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!
12-09-2015, 06:38 PM   #167
ronroush7
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That is great.

12-10-2015, 09:28 PM   #168
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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.
12-10-2015, 09:32 PM   #169
ronroush7
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Thanks

12-22-2015, 08:58 AM   #170
my little penguin
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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
12-22-2015, 12:50 PM   #171
kimmidwife
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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.
12-22-2015, 12:57 PM   #172
my little penguin
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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
12-22-2015, 01:05 PM   #173
kimmidwife
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Glad to hear. Fingers crossed that it works for him!!!
12-22-2015, 03:22 PM   #174
Maya142
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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 .
07-01-2016, 06:56 PM   #175
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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.
07-01-2016, 08:53 PM   #176
ronroush7
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Thanks for your attitude.
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