Anyone else have gastroperesis and CF?

[Mike Brown]

I'm having a hard time putting any weight back on between having the two. I lost 40lbs, with stomach problems before being diagnosed with gp and cf, I'm 5'6 and only weigh 115 lbs right now (male).

I was wondering if anyone else has both and if so, how do you manage? I have a VERY hard time with regurgitation, especially with liquids, stuff just sits in my stomach and comes up on its own whenever I burp, it makes me very sore and sick. It's a terrible combo because with cf and being pancreatic insufficent they want me to eat more, but I literally can't because of the gp and I can't drink down shakes or anything because liquids are harder for me to keep down than solids. It really sucks and I'm starting to wonder if I have a blockage somewhere because I literally can't seem to drink without burping and it coming straight out of my mouth and this will last for hours.

 

[Ratatosk]

How's your output? DS had similar issues when he had a blockage several years ago. His output was malabsorbed, as if he hadn't taken enough enzymes. In his case, he has adhesions caused by his surgery as an infant for a bowel obstruction caused by meconium ileus. He could would only eat small amounts and say he was full. Pretty much survived on carnation instant breakfast and juice. So in his case he was able to tolerate liquids, it was just when he'd eat something a little more substantial like chicken strips or a burger that he'd have problems. Sometimes he'd eat lunch at 11 and 6 hours later, undigested food would come back up.

I started documenting when it'd happen because it wasn't consistent at first. His eating slowed down and then he got incredibly sick overnight and couldn't keep anything down.

'Course if it's gp, that could also cause similar issues. Have you been referred to a GI specialist?

 

[Mike Brown]

How's your output? DS had similar issues when he had a blockage several years ago. His output was malabsorbed, as if he hadn't taken enough enzymes. In his case, he has adhesions caused by his surgery as an infant for a bowel obstruction caused by meconium ileus. He could would only eat small amounts and say he was full. Pretty much survived on carnation instant breakfast and juice. So in his case he was able to tolerate liquids, it was just when he'd eat something a little more substantial like chicken strips or a burger that he'd have problems. Sometimes he'd eat lunch at 11 and 6 hours later, undigested food would come back up.

I started documenting when it'd happen because it wasn't consistent at first. His eating slowed down and then he got incredibly sick overnight and couldn't keep anything down.

'Course if it's gp, that could also cause similar issues. Have you been referred to a GI specialist?

Hey I was just reading up on that actually. I just got diagnosed a couple weeks ago and havent seen much difference on the enzymes to be honest, but have only been taking them for a couple days. I lost 40 lbs with this mystery stomach problem and like your son Im going through the same thing, I can eat chicken and throw it up 6 hours later, not that I can eat chicken anymore, since I barely eat anything besides animal crackers due to this pain and general misery this is causing me.

Gastroperesis does have similar symptoms, but the interesting part is my stomach emptying was generally normal in terms of my stomach contracting they said, but then when I got my endoscopy they saw old food. How did he get diagnosed with the meconium ileus? It might be something to look into now that I've been diagnosed with CF. I get really full after a very small ammount of food as well and it came out of no where seemingly, but now it['s been a half a year and I still havent gotten the problem fixed.

 

[Ratatosk]

Meconium ileus was a bowl obstruction at birth. About 12 hours after he was born he began throwing up.

With his 2nd bowel obstruction years later they ran contrast down an ng tube and took xrays to see how far it went, where the blockage was located. Then they ran it thru the opposite way and determined by that time his colon/large intestine was clear.

Are you still taking enzymes with food? I assume they determined you were pancreatic insufficient. Could be too you're adjusting to the enzymes. Sometimes when we increase ds' enzymes, he gets a little plugged up. And this past weekend he ate too many nuts and not much else and needed a little help getting things moving again --- had stomach pain, said he felt like he was going to hurl... Next day after a dose of milk of mag, he got things cleaned out.

 

[Mike Brown]

Ratatosk, may I ask how exactly he was diagnosed and what they did to treat it?

 

[Ratatosk]

With his last blockage we thought he had a stomach bug because prior to that he'd lost weight and had his vomiting episodes were sporadic. He didn't have them every time he ate a larger than normal meal. But the weekend prior to the blockage he vomited. Then over the next day or so he couldn't keep anything down, not even soda and he stopped stooling. He complained then of pain, so we took him to the ER and an ultrasound showed a blockage. They tried putting golytely down an ng tube get things moving. Then they did the gastrographin (sp) contrast on both ends to see what was going on and in the hopes it'd break things loose. Usually with a blockage they try using a laxative like golytely for a couple days to get things cleaned out. It didn't work for him as his blockage was too far gone. So he ended up having surgery to clear the blockage and clean up the adhesions.

When he's had minor issues, where he's plugged up, we've been able to use milk of magnesia to clean him out. And when he's had a stomach bug in recent years, it has taken him a little longer to recover and to get back to eating regular foods. Just seems to throw him out of whack and it seems his digestion slows down.

Hopefully others on this site who've either had issues with GP or blockages can add some input here as well.

 

[Mike Brown]

With his last blockage we thought he had a stomach bug because prior to that he'd lost weight and had his vomiting episodes were sporadic. He didn't have them every time he ate a larger than normal meal. But the weekend prior to the blockage he vomited. Then over the next day or so he couldn't keep anything down, not even soda and he stopped stooling. He complained then of pain, so we took him to the ER and an ultrasound showed a blockage. They tried putting golytely down an ng tube get things moving. Then they did the gastrographin (sp) contrast on both ends to see what was going on and in the hopes it'd break things loose. Usually with a blockage they try using a laxative like golytely for a couple days to get things cleaned out. It didn't work for him as his blockage was too far gone. So he ended up having surgery to clear the blockage and clean up the adhesions.

When he's had minor issues, where he's plugged up, we've been able to use milk of magnesia to clean him out. And when he's had a stomach bug in recent years, it has taken him a little longer to recover and to get back to eating regular foods. Just seems to throw him out of whack and it seems his digestion slows down.

Hopefully others on this site who've either had issues with GP or blockages can add some input here as well.

Hmm, if you have a chance could you ask him if he had any lower abdomen pain or pulsating when he had this. Also, if I'm going to the bathroom while having this issue, would that rule this out?

Thank you for the reply, I really appreciate it

 

[Aboveallislove]

Hey Mike,
I don't know about gastropresis, but given what I remember of your situation, I would be concerned that you have a partial blockage. Those who are pancreatic insufficient need enzymes to prevent a blockage and my recollection is that you had several months of unknown stomach issues before your CF diagnosis, so I'm thinking that you were PI during that time and that could have started the build up. The issue is DIOS, which is the equivalent of MI, but after birth. What you decide is consistent with it. What I would recommend is you call your GI (I believe you have one who was working with you) and say that you have been vomiting, having pain, etc. and that since CF is new you checked with some in your support group who suggested that you might a blockage starting or DIOS and that you were hoping they could do a flat belly Xray to see if you are FOS ("full of stool"). If you are, they can try to give you a Miralax clean out and/or enimas from home. DIOS can be very serious and it can build up over time. DS was like Ratatosk's son in that he was having issues and vomiting but then on a dime he couldn't keep even water down. And DS was stooling during this time. It can go around the blockage until it can't. You might also look at the posts by Diana re her daughter's stomach issues, as her daughter had months and months of problems and even after a clean out prep still had stool stuck in the corners of her GI track. Good luck.

 

[Mike Brown]

Hey Mike,
I don't know about gastropresis, but given what I remember of your situation, I would be concerned that you have a partial blockage. Those who are pancreatic insufficient need enzymes to prevent a blockage and my recollection is that you had several months of unknown stomach issues before your CF diagnosis, so I'm thinking that you were PI during that time and that could have started the build up. The issue is DIOS, which is the equivalent of MI, but after birth. What you decide is consistent with it. What I would recommend is you call your GI (I believe you have one who was working with you) and say that you have been vomiting, having pain, etc. and that since CF is new you checked with some in your support group who suggested that you might a blockage starting or DIOS and that you were hoping they could do a flat belly Xray to see if you are FOS ("full of stool"). If you are, they can try to give you a Miralax clean out and/or enimas from home. DIOS can be very serious and it can build up over time. DS was like Ratatosk's son in that he was having issues and vomiting but then on a dime he couldn't keep even water down. And DS was stooling during this time. It can go around the blockage until it can't. You might also look at the posts by Diana re her daughter's stomach issues, as her daughter had months and months of problems and even after a clean out prep still had stool stuck in the corners of her GI track. Good luck.

When I was in the hospital a couple weeks ago they did a cat scan, ultrasound, and endoscopy, would those have showed it? And that's funny you mention that, I actually have miralax at home and take it lol

I will bring it up with my doctor and see if he emails me back and what he thinks. Ty for advice

 

[ForeverDance]

My DD had symptoms like you describe. She would be fine for a few weeks and then she would slowly stop eating and finally start vomiting (which would last all night long). What she would throw up would be thick and usually contained food from as much as 14 hours prior. We would do some extra doses of PEG, and then she would seem fine. Rinse-repeat for a couple months. They ordered a full clean-out doing the same thing you would do for a bowl prep for a colonoscopy and the big "blow out" they were expecting never happened. So they did x-rays which showed no blockage. 3 days later she has some pretty loose stools but nothing like they expected. In the end they ended up calling it "a severe delay in gastric emptying". She is now on both domperidone and erythromycin and (knock-on-wood) we haven't seen another isssue in about 6 months.

 

[Ratatosk]

Hmm, if you have a chance could you ask him if he had any lower abdomen pain or pulsating when he had this. Also, if I'm going to the bathroom while having this issue, would that rule this out?

Thank you for the reply, I really appreciate it

He did this past weekend when he ate too many peanuts. Pain in the lower abdomen and a feeling of fullness. But when he had his vomiting episodes a few years ago, he felt a sharp pain and everything came up.

With his obstruction, he was still stooling prior to getting completely blocked up albeit it was loose, orange with greenish flex and left a ring on the waterline of the toilet. Being that he never really did have normal looking stools we didn't think much of it. His issues too were over time until things just couldn't get around and a blockage occurred.

Even AFTER his surgery, while recovering in the hospital, he didn't stool. So they tried mucomyst and golytely down an ng tube. Tried the gastrographin enemas and nothing worked. This went on for a week. They night before they scheduled him for exploratory surgery, he had horrible stomach pain and my husband sat up rubbing his stomach, said he could feel things moving around. Next morning in the 11th hour, as I was signing papers for more surgery he ran to the bathroom and expelled some hardened tar like stools. So even with xrays, a hospital full of experts, they didn't realize he still needed to get all that stuff out.

 

[windex125]

Hi, I was diagnosed with gastroperasis a few years ago. I am female turned 60 last Dec. My gastro doctor had me do a test with neculear medicine they took pics of my stomach then had me eat scrambled eggs with some kind of contrast then wait 2 hrs and did pics again, the machine was like getting a MRI and it showed that the eggs had not moved. I was diagnosed with the gastroperasis and put on a drug called Reglan. I stayed on it for a yr. maybe alitte longer and weaned myself off. I also have Acid reflux. I was hvg very bad reflux, bloating, and sometimes vomiting. Pat/CF

 

[TerriC]

My daughter has been told that she also has gastroparesis. She too was born with meconium ileus and has had stomach issues pretty much her entire life but they did not get severe until the last few years. She did go into the hospital on a few occasions for clean outs with peglyte and everyone was amazed at how long it would take to clean her out. When they did the gastric emptying test they told us she had slow emptying but nothing about gastroparesis until the last time we went to the hospital in November. She had been starting to vomit everything up in the spring of 2014 with occasional pain and she took Tylenol 3's for. Once she started losing weight in the fall, they admitted her to the hospital and she was in for 6 weeks while they tried to figure it out. The CF team kept maintaining that it was a blockage causing all the pain but they could find nothing - she had cat scans, MRI's, colonoscopy, xray's...everything came back negative. They also started her on dilaudid in the hospital and unfortunately she is still on it - I think it was a mistake in retrospect as this is a narcotic that can also cause some of the pain, nausea, vomiting etc. She was prescribed domperidone, cisapride, omeprezol as well. Nothing has really worked for her and they finally placed a GJ tube. We are currently seriously investigating natural holistic methods as none of the "medicine" she is taking has helped at all. Please let me know if you want any more information on this, we are very hopeful that we can start to heal the nerves in the stomach and intestines that seem to have stopped working. If you are interested in finding out more about gastroparesis there are many facebook pages out there but one that we have found that we are really hopeful about is "healing gastroparesis naturally". Hope that everything works out for you.

 

[randomgirl]

Mike Brown- I have Cystic Fibrosis and gastroparesis too and it's a pain in the butt! My stomach nerve was cut when I had my lung and liver transplant. I was on Reglan for months and then the doctors took me off of it. I was fine for a while but then in about 3 weeks time, I ate less and less, until I barely ate anything all day. I lost a lot of weight and I got down to 80 lbs at 5'2.5" I too thought I had a blockage. So I told my lung transplant coordinator about it so she ordered a barium swallow test which took around 8 hours I think and the barium never even went through my whole digestive track. They just stopped because the nurses had to go home. But I didn't have a blockage. So I had tried the Reglan again during that time but it didn't work. My doctor prescribed me Domperidone. I take it 4 times a day, 20-30 minutes before meals. It saved me! Although it is not found at most pharmacies so it is VERY hard to find and my insurance won't pay for it. If you can, try Reglan. But if that doesn't work then you could always use Domperidone. Good luck!

 

[Mike Brown]

Mike Brown- I have Cystic Fibrosis and gastroparesis too and it's a pain in the butt! My stomach nerve was cut when I had my lung and liver transplant. I was on Reglan for months and then the doctors took me off of it. I was fine for a while but then in about 3 weeks time, I ate less and less, until I barely ate anything all day. I lost a lot of weight and I got down to 80 lbs at 5'2.5" I too thought I had a blockage. So I told my lung transplant coordinator about it so she ordered a barium swallow test which took around 8 hours I think and the barium never even went through my whole digestive track. They just stopped because the nurses had to go home. But I didn't have a blockage. So I had tried the Reglan again during that time but it didn't work. My doctor prescribed me Domperidone. I take it 4 times a day, 20-30 minutes before meals. It saved me! Although it is not found at most pharmacies so it is VERY hard to find and my insurance won't pay for it. If you can, try Reglan. But if that doesn't work then you could always use Domperidone. Good luck!

Hey all, thanks for the reply. Yea, right now I'm on erythromicin, it's an antibiotic, that when taken in smaller doses makes your stomach contract. It works better than the domperidone for me personally, but I don't think it's something you can take super long term. When I took the domperidon I got really bad cramps and pulsating in the bottom right abdomen I guess where like my small intestine/colon would be. It was very painful, like a 9 out of 10 pain, not like a minor annoyance. I'm back on the erythromicin for a few days to see if the domperidon was causing it.

And I'm trying my hardest not to have to take reglan because of all of the terrible irreversible side effects I've been warned about on it. I don't think it is worth the trade off risk for me just yet. I'm glad you're doing better!

Ps Randomgirl, where are you getting your domperidone? I got it from inhousepharmacy in Canada for $135 for 600 pills. Insurance doesn't cover it, but it's pretty reasonably priced, just wanted to toss you that info just in case you're paying more for it.

 

[randomgirl]

What terrible irreversible side effects does Reglan have? I took Reglan for many months and I don't think I have irreversible side effects from it. I've been taking Domperidone for about 9 months and I haven't had those cramps/pulsating thing. Although I did have a few random episodes where I had the cramps/pulsating feeling where my kidneys are. But that only lasted about a week or 2. I hope you find a good treatment for your issues. I'm getting my Domperidone from a private pharmacy called Roberds Pharmacy. It's $60 for 120 pills (4 pills a day). Thank you for letting me know about another pharmacy and their price.