About this Support Group

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.

Members

addyp, bhoffman, Essieluv, Everly, Farmwife, imogenxsutton, Johnnysmom, Kayla86jc, Keralin, kimmidwife, littlemissh, maggie882, Muppetgirl, nayabk, patrick13, paul11, RenGen, ronroush7, SharonLBach, sidney75, Sooz, Stardust_Fiddle, 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!

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.

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

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).

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!

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.

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!

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)*†

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?

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.

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.

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.

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.

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...

Sometimes I think that science will never catch up! lol

Haha, yes me too.

Me three!

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.

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. I hope that things work out for you!

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.

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

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!

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.

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!

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!

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.

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.

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?

I'll keep that one in mind, thanks!

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.