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Labradorite
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Date Joined Sep 2009
Total Posts : 991
   Posted 7/29/2017 9:33 AM (GMT -7)   
have any of you that also have GERD had issues with getting it under control? I have had GERD for many years but usually only when in a crohns flare and after several months I am able to ween off of the medications for it. This time I have been dealing with it since February. I started Aciphex again around April for it which used to completely knock it out with the first few days. I think it helped for a little while but now Im noticing it again constantly. I have ruled out every type of food that is listed as something that would aggravate it, eat small meals and am trying to increase foods that should help it. I think it has improved a bit but its still there! Can you develop a tolerance for a PPI and have it no longer work? What do you do?

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 710
   Posted 7/29/2017 2:35 PM (GMT -7)   
Lab,

My spouse had acid reflux. He does not have Crohns or anything like that but.....after taking his PPI for awhile it did not work as well. We had to switch and after 6 months he was finally able to wean himself off.

His heart doctor told him that sometimes your body builds up a tolerance, you have to switch, and sometimes you can eventually go back to the other med. Thankfully he weaned himself off...but at night in bed he sometimes had alittle issue. We raised the head of the bed. You can do that by placing a concrete block.... (or you can use wood) or by using lots and lots of pillows or by getting an adjustable bed.....however you want to do it. The block and the pillows have done it for us so far but we are now looking at adjustable beds....

Know its not the exact same but thought this might help.

Hope you feel better soon!
Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 991
   Posted 7/29/2017 11:25 PM (GMT -7)   
Thanks Clo! I am going to keep experimenting. I've tried to sit up more but I'm not sure if its helping. Worth a try though right! If I can't resolve it before my next remicade in little under two months then I'll ask if there is another med I can switch to for a while. Had always hoped that by never being on it too long at a time that I wouldn't get to the point where it no longer worked.

minnietoty
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Date Joined Dec 2010
Total Posts : 2752
   Posted 7/31/2017 8:47 AM (GMT -7)   
Hi Lab, I have been having long-standing GERD for almost 19 years so I think I can relate. Out of experience what really aggravates my reflux is drinking a lot of fuids even water all at once and not taking break. For example, if you're thirsty, take a sip of water or juice every now and then but don't drink it all at once. Never lie down after you drink as all would regurgitate. Wait for 2 hrs at least. The same applies to food. Don't eat large meals, 5 or 6 snacks would be better.

Avoid tomato and tomato sauce, strawberry, chocolate, preserved juices, spicy food, too much salt, very hot or very cold food, citrus and caffeine. My GI has always warned me against drinking tea but I drink tea,a,lot and he eventually gave up and told me to add a few drops of milk to it. Also, don't drink milk. Just a few of it would be Ok.

As for medication, I have been on Nexium 40 double dose for 10 years now. I have to take Baclofen and Zantac (300 mg once) or famotidine along with it. I'm also keen to take Maalox before bedtime to prevent reflux of building up while I'm sleeping.

I have developed tolerance to other types of meds as well. If I might say I have exhausted all types,of PPI. But when I feel that a flare up is lurking, I resort to boiled potatoes w/o skin, milk or butter and hard boiled eggs. I stay on this diet for a couple of days until my stomach gets,well. If things get out of control, my GI would put me on Nexium iv and,other iv injections and order me to eat just rice pudding, custard w few rops of skimmed milk and jello for 2 weeks to rest my stomach.

I use two pillows while sleeping so that I don't get acid reflux.
GERD, perianal fistula, CD, IBS, persistent mouth ulcers & fissures
___________________
Meds: Remicade, Cortiment, Nexium, Imuran, colifoam, monthly B12 inj.
Pred 40 mg from Oct. 2010 till Jan. 2012
Previous: Mesalamine tablets & supp.
Failed:Azathioprine (generic), Methotrexate

scifigal2k
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Date Joined May 2012
Total Posts : 3313
   Posted 7/31/2017 11:08 AM (GMT -7)   
I think you need some stronger, long-term PPIs.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1830
   Posted 7/31/2017 11:24 AM (GMT -7)   
I've been fighting GERD for several years off and on. Lately though it's more on. I'm on 40mg of protonix daily and my GI just added zantac twice daily. I'm going in for an EDG on 9/20 to see what's going on.

I'm curious do any of you also have a hiatal hernia? My GI mentioned that if changing up my meds doesn't help he might suggest a surgery to repair the hernia. He says it's 50/50 on it working past the 5 year mark but at this point I'm game. Tired of propping myself up to sleep.
DX with CD Aug. 1982
Gerd secondary to crohns
Entyvio
Methotrexate
Monthly b-12 injections
40 mg Protonix / twice daily
Zoloft
xanax
folic acid

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 991
   Posted 8/1/2017 11:14 PM (GMT -7)   
Thank you everyone! Really very informative! I've tried some of these things but not all. I'll have to experiment over the next few weeks and if the adjustments don't work I'll ask my doc about switching meds. Does anyone notice that time of day taking the PPI makes a difference? I was taking it in the evening with my other meds since that's the time I have more trouble but I've just switched it to the morning. Not sure if it's made a difference or not yet since I still only have brief breaks with out some level of it bothering me.

@lamb I hope your EDG goes well! Surgery is no fun but yes, if I had that option I'd probably go with it. The one change I have the most trouble with is sleeeping propped up since I can only sleep well flat on my side:/.
Still I count my blessings- no crohns trouble currently. Compared to the past this is a minor inconvenience.

Mrs. Brady
Regular Member


Date Joined Feb 2015
Total Posts : 220
   Posted 8/2/2017 6:46 AM (GMT -7)   
I have GERD as well and take Prilosec, 20 mg daily and it works for me. I had my GI write a script and with some back and forth got my insurance to cover it. I have been taking it for 4 years and normally take it in the morning.
Hoshimoto's Hypothyroidism DX Oct 1997
Pancolitis DX Nov 2013
GERD DX Nov 2013
Lupus, DX Sept 2015
Medications - Synthroid; Hydrocort Enemas (as needed); Prilosec; Iron; Plaquenil; Vit D, Humira
Past Meds: Lialda and Imuran - adverse reactions to both, discontinued

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 991
   Posted 8/19/2017 9:57 AM (GMT -7)   
Hi everyone,
How long does it take you to get a GERD flare up under control?
I was doing better with this for a bit, I switched the medication to the morning and things seemed to improve but then it hit big time. Like the worst flare up of reflux I've had in years. Last time it was this bad I was in terrible shape with the crohns, so I'm not sure why it's gotten so out of hand. I did have some tomato when I was feeling better but would a few minor dietary slip ups make it this bad for this long? It's been about two weeks now of badness. Started with the burning in my throat, then up into my ears. It got pretty intense so I started sleeping sitting up and got really strict with my diet and don't eat after 7pm. It helped the burning in my throat but now I have a nasty pain and soreness in my lower neck and chest that goes through to my back. It gets a little better when I eat but then like a half hour later it comes back even worse and then levels out. I was really hoping I wouldn't have to call about this and that I could make it to my next infusion and speak to my doctor then but that is a month away.

Post Edited (Labradorite) : 8/19/2017 11:43:40 AM (GMT-6)


scifigal2k
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Date Joined May 2012
Total Posts : 3313
   Posted 8/19/2017 2:33 PM (GMT -7)   
It sounds like your PPI just isn't strong enough anymore. I'm sure your doctor would switch meds just with a phone call.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

beave
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Date Joined Mar 2007
Total Posts : 1653
   Posted 8/19/2017 11:26 PM (GMT -7)   
I had quite a bit of GERD issues back around 2000-2003 that weren't fully going away even doing all the lifestyle things and also taking Aciphex every morning. I don't know for sure because no Crohn's tests were run at the time, but I was also having lots of on/off abdominal pain around that time. And I think the reflux was secondary to small bowel inflammation. I also have a small hiatal hernia, so that could be a factor too. But whatever it was, it gradually went away, and I've been off PPIs for 10 years now.

Yes, you should take the PPI in the morning, before your first meal of the day.

If a PPI isn't enough, you can also take an H2 blocker like Pepcid, Zantac, or Tagamet or generic equivalent.

Have you ever had an upper endoscopy? GERD as bad as you are describing warrants a visit to your gastroenterologist.

Labradorite
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Date Joined Sep 2009
Total Posts : 991
   Posted 8/20/2017 12:28 AM (GMT -7)   
Thanks @scifigal and @beave. I agree, my GI is getting a call this week. Ive had to cut back on eating so much its making me grumbly and lose weight. It did help calm things down temporarily but all I have to do is eat and its a toss up as to wether it bothers me or not.

@beave, yes all of my previous issues with GERD went along with very active crohns so this is unusual for me. Aciphex also always worked for me in the past within a week or so and after a few months (and controlling the crohns) I was aways able to wean off of it. My last endo was a year and a half ago. it was clear except very minor inflammation that the doctor said was normal.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4382
   Posted 8/24/2017 5:02 PM (GMT -7)   
I am like you. I had bad GERD when I had active Crohn's and a stricture. After my re-section surgery my GERD disappeared. I took Dexilant and it helped me a lot. I hope you find something that works soon!
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15290
   Posted 8/24/2017 6:56 PM (GMT -7)   
I have a long history of GERD. Over the years I have taken every script PPI there is. My dr said it takes 2-3 months for the PPI's to be fully effective. He would also switch them around so that I did not build up a tolerance. The acid was horrible, so bad that it would come up the back of my throat & out of my nose, resulting in me throwing up. I would wake up in the middle of the night with this going on. We tried propping the bed, apparently we didn't get it high enough. I changed up my diet completely, nothing acidic, no alcohol, no caffeine, ditched chocolate, no butter or margarine, both of these really set me off, & milk. I had a super bland diet, it was the pits. I eliminated a lot of my normal food over time. Because of the waking up at night thing, I decided to sleep in the recliner. I slept in that recliner for almost 3 years!! Between the meds, strict diet changes & sleeping in the recliner it stopped. By the way, the chair is my husband's, big man size, extremely comfortable & no I did not recline it back fully. Not saying this is a cure for anyone, I firmly believe the recliner did the trick for me. I am now sleeping in the bed but you can bet, if it hits again, back to the recliner.

I hope you can get some relief.
Susie
Moderator in Chronic Pain & Psoriasis Forums

randynoguts
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Date Joined Jan 2003
Total Posts : 6130
   Posted 8/25/2017 1:21 AM (GMT -7)   
been on a few different meds.. pantoprazole is what I have been using for a few years now.. also have ahospital bed and keep the head up about 10%

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 991
   Posted 8/25/2017 7:17 AM (GMT -7)   
Thanks everyone! I tried getting a hold of my doctor about switching medications the other day but it seems my phone didn't want me to hear from him because it didn't notify me of the call until the middle of the night so I missed it. Will try again but I have made some progress on my own. I've been sleeping pretty much sitting upfront the last two weeks or so. I completely reworked my diet, keeping track of what I eat, not eating late. It has helped but still not where I would like it to be. The last time I talked to the GI about it he felt it was related to all of the medications I'm on. I'm thinking about starting to take my medications at different times and seeing if I can find one specificity that's causing problems but that will be an annoying experiment. @Gumby I'm so glad yours went away after the surgery! I wish this would go back to following my usual pattern.

@straydog, wow! I'm so glad you found a combo that worked! I used to have a recliner and I wish I had it now! Making a fort of pillows around me at night to keep me from melting back in to my usual position of being flat on my side is a task but I'll do what ever it takes to get some relief.

Labradorite
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Date Joined Sep 2009
Total Posts : 991
   Posted 8/25/2017 4:20 PM (GMT -7)   
I'm so frustrated though. I've been trying to get through to my doctor all week. I called again today and nothing. They said they would leave message. Seems like it will be another weekend of this. Being hungry is making me rather grumpy but when I eat it sets off the chest and back pains so I don't feel much like doing that.

scifigal2k
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Date Joined May 2012
Total Posts : 3313
   Posted 8/25/2017 6:57 PM (GMT -7)   
@Lab, is there any chance it could be pancreatitis?
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

Labradorite
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Date Joined Sep 2009
Total Posts : 991
   Posted 8/25/2017 8:37 PM (GMT -7)   
I don't think so, I've never had pancreatitis before though so I'm not sure what to expect with it. This isn't as painful As I would expect the other to be and its up pretty high.I had a complete work up with my bloodwork recently and everything was fine. I also get the lump in the throat feeling and the burning low in my neck and my ears.

I called the doctor that you can speak to for free with my insurance to see if he could recommend anything. His response was " let me go look at my reference book" LOL aka textbook haha. He was nice enough, listened and sympathized but told me he was completely useless in this situation.

I finally spoke to my pharmacist and ended up getting extra strength zantac. I am hoping this in combo with the aciphex will make a difference!

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3313
   Posted 8/26/2017 4:46 AM (GMT -7)   
Okay, I know that the front is different, but my radiating back pain with pancreatitis feels the same as it does when my GERD is acting up. But I never feel GERD in the front, so it always stresses me out lol.

I would suggest trying Dexilant. It's a step up from Nexium, and it lasts for 36 hours in the body instead of 24, so you don't have to wait 30 minutes before/after eating to take it in order for it to work well. My Nexium stopped working, and Dexilant has helped.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

Labradorite
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Date Joined Sep 2009
Total Posts : 991
   Posted 8/26/2017 3:41 PM (GMT -7)   
Haha, yes thats like me. I had the chest pains with the embolism so everything makes me think its another one of those. Im pretty confident its not this time but I guess we will see, this is the first time I've had it like this. I will look into the Dexilant. Is it prescription or OTC? Even with the max zantac and aciphex today didn't totally get rid of symptoms. much less burning but the discomfort is still there. I also was really nauseous today so I don't think I will be combining the two again.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3313
   Posted 8/26/2017 3:52 PM (GMT -7)   
Dexilant is prescription. I think it's the strongest PPI out there, at least with the "prazole" meds. The first level is omeprazole (or Prilosec), and the doses range from 20 mg to 80 mg. Then after that it's esomeprazole (or Nexium). 40 mg of Nexium was more effective than 80 mg of Prilosec for me. Then the top tier is dexlansoprazole (which is Dexilant), and I'm on 60 mg of that. I switched to it when the 40 mg of Nexium stopped working well after a few years of being on it.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 991
   Posted 8/26/2017 4:04 PM (GMT -7)   
Thanks for the run down of them! Where does the Aciphex/Rabeprazole fit in? Is it close to Prilosec in strength? Hopefully I will hear from the GI and this combo will hold me over for a little while.

Post Edited (Labradorite) : 8/27/2017 10:27:34 AM (GMT-6)


scifigal2k
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Date Joined May 2012
Total Posts : 3313
   Posted 8/26/2017 6:31 PM (GMT -7)   
I'm not really sure, actually. It wasn't one of the three that my GI explained to me, lol!
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 991
   Posted 8/29/2017 9:47 AM (GMT -7)   
Haha, I really which there was a chart of all the medications used for this, it would be so helpful. I was really grateful The GI called me back during the weekend. I got a strong PPI and if it's not better in a week they will look into it further. It has helped the burning acid feeling at least for the majority of the day but I still get pain in my chest free I eat and the feeling that it's sitting in my throat. Not as bad as it was though. Im not sure whether I should take the second dose at night or not. I was told to do my best to avoid it. I can function like this but I hate still dealing with the discomfort in the evening.
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