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Crohn's and Gastroparesis Support Group

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.
 
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! ;-)
 
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.
 
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. :-/
 
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!!!!
 
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.
 
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?
 

DustyKat

Super Moderator
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.
 

Maya142

Moderator
Staff member
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?
 
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.
 

Maya142

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

Maya142

Moderator
Staff member
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.
 
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.
 
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.
 
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.
 
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:
 
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.
 
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.
 
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?
 
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.
 

Maya142

Moderator
Staff member
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.
 
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.
 
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.
 
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.
 
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.
 

Maya142

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

Maya142

Moderator
Staff member
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!!
 
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.
 
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.
 
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!
 
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.
 
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:
 

Maya142

Moderator
Staff member
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!
 
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.
 
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.
 
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.
 
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?
 

Maya142

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

Maya142

Moderator
Staff member
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 ;)
 
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.
 

my little penguin

Moderator
Staff member
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
 
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.
 

my little penguin

Moderator
Staff member
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.
 

Maya142

Moderator
Staff member
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!
 
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.
 

my little penguin

Moderator
Staff member
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
 
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.
 

my little penguin

Moderator
Staff member
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
 

Maya142

Moderator
Staff member
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:.
 
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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