So, I'm caught between a rock and a hard place. I have stomach erosions from a highly acidic diet, vitamins, etc. so I need a proton pump inhibitor.
(Does anybody besides me think Star Trek whenever they hear that? Ready proton pump inhibitors, Captain!)
Yet I no longer want to be on them since I read that our livers don't regenerate on those meds. I want a happy, clean, liver, call me silly!
When first diagnosed I tried to find out if any of my meds had symptoms similar to what I was experiencing as it couldn't possibly, really be RA. Protonix, which I'd been on about a year, had a side-effect profile in the PDR that was very similar to what I was experiencing. So I stopped, cold turkey.
And barfed bile continously for about a week. So, hanging my head in shame, I decided that was a med I probably needed and as the pain didn't abate, thought it probably wasn't the med. I've since seen some research asking if PPI's don't contribute to the onset of these diseases, but that's another story.
I cut down to half dosage and went on with my life.
Until the 'liver doesn't regenerate' thing. I want off. I decided to not refill my script and just 'tough it out'. I had some heartburn but...over all, not too bad after a few days.
The day after my sleep mask fiasco, I woke up in the middle of the night unable to breathe. It was horrifying. GERD had backed up into my esophagus (spelling) and sort of fused it shut. I finally got it open again...but not exactly something I want to experience again. Hubby was trying to smack me on the back, I'm trying not to puke, I'm gasping for air, and the pain is horrenous.
I filled the scrip the next day.
OK, anybody got any bright idea's on 1) naturally healing the stomach or 2) weaning off this stuff? Should I try every other day? It wasn't nearly as bad as the first time I cut the dose - but I didn't stop breathing then either.
Pip
Pip - That sounds scary! I'm sorry I can't help you but I hope you get the help you need. Is this a side effect from your AP? I am so overwhelmed by RA that I'm about to throw in the towel! It sucks!!
Lori
Good god woman!
I wish I had some advice. Protonix is like....life juice for Justin. :( I don't know what he'd do without it. It does more than just control the GERD aspect of the Crohn's though, so I guess it's worth the risks, ya know?
You haven't found any natural diets that are designed to repair this kind of thing??? Do you still drink milk? Or have a lot of dairy? That could cause it. (Duh you already know that.)
Maybe it's just me......but I feel breathing is very important! I wouldn't try that again unless under dr.'s care. That doesn't need to be repeated. Is your liver counts that high that you need to reduce the protonix? I would rethink that.
No, the GERD was from a pot of tea every morning, a 2 liters or more of DC a day, pre-natal vitamins for years, aspirin for years for headaches, stress, etc. etc. etc. Looking back, I'm amazed my stomach held out as long as it did.
When people start AP they report nausea as a side effect - but it usually clears up within 3 months. I think our use of probiotics helps us - most of us probably have stomach issues to start and as we replenish, we get less 'stomach trouble'. I didn't have trouble with nausea on AP.
No, this is probably all the med. If you would have seen the first wean, you would have known that somehow the med had suppressed something. I mean, it was A LOT. I remember thinking 'who has that amount of bile in them' and thinking it was me. I'm now wondering if it was (mostly) the med.
So, there has to be something I can do. If nobody has suggestions maybe I'll just try every other day until I'm functioning 'normally' for a while - then try the last bit again.
I'm such a wuss.
Pip
Pip, I don't think you are a wuss. I think you are very brave to try it again. It sounded like an awful thing to go through.http://www.sciencedaily.com/releases/2006/04/060414013606.ht m
People get off this stuff all the time. It's supposed to heal the stomach and that was the plan. But then the PRA struck and with added NSAID's...
I guess I'm just saying this bile thing isn't 'right'. It's way more than I'd expect. I cut out the DC (for the most part). The tea was way down. I eat a lot more healthily (except for Xmas). I don't think I have a dairy problem but haven't been tested to know for sure.
I think it's the med...not me. I'm botching the explanation, I know. Does anybody know if when the med is removed if the liver just goes crazy for a while?
Pip
Hi Pip,
That sounds awful and scary! I'm not up with what protonix is so I can't help with that unfortunately. I know I am on losec and when the Gastric Reflux gets worse I go on Nexium. I am also on mtx and so far it hasn't effected my liver. Is there nothing else similar that they can try for you? Have you had an endoscopy to see what is going on there? They can do biopsy that way and know what is going on.
Hope it gets sorted out soon for you
Proton pump inhibitors reduce hydrochloric acid secreted in the stomach. Bile acids are different (based on a cholesterol steroid backbone) and are released and resorbed in the small intestine. Two completely different types of "acid".
My bad -
The link was to an explantion on liver regeneration and the 90% cycle thing. This is not the link to PPI's and liver regeneration. I've got that somewhere else.
I just don't want to be on this med anymore.
I didn't have this amount of acid reflux before the med. It was only mildly annoying - no quality of life issues. I'm a whole lot healthier than when I started this med. Waaaaay less stomach acid producing diet. Before Christmas, was on a lot of alkalizing things like baking soda drinks. Even with the salsalate (asprin without stomach irritating ingredients) and PRA, waaaaay less NSAID's. Stress minimal in LA. So why is the stomach acid so very, very, very much more?
Thanks,
Pip
Hi Pip - sorry to hear of your acid prob. My recommendations would be Aloe Vera Juice for healing of stomach lining, peppermint tea for reflux and St. Mary's Thistle for liver probs. These all work well and hope they help. Also have put myself back on a food combining diet - tried it twice some years ago and felt healthier than I have ever felt before - was pre RA days.Pip I am so sorry to hear about what you went through very scary.
I don't know much about 99% of all the meds everyone on here talks about. I do know about GERD. I have it bad. It really started getting terrible after I had my gallbladder taken out. Doc said I was getting some spasms (sp) and it hurt so bad. Felt like someone was ripping out my chest. And making me so so sick. So along with the prilosec every day I also take dicyclomine (probably the generic name).
I tried it for a month. And it was wonderful. If I take it every single morning no more pain. Or weird spells I call it. lol I am suppose to take it twice a day but I noticed it works if I only take one a day. So for now that is what I am doing.
Oh Pip, that breathing episode sounds horrible. You must have been in an absolute panic. I wish I had some advice for you, you've always been so generous in sharing your vast knowlege with us. But I can offer you my prayers and best wishes while you search for the answers. Please let us know how you're doing.Pip, I'd do further research and read the actual research study and look at the number of liver regeneration incidents that was found or has been reported. Those numbers are buried someplace in the literature. If low ratios found, I'd take Protonix, remember you also only have one stomach.
I just recently stopped Protonix with my doctors approval and have done fine. I was on Celebrex and other NSAIDs for years and have stopped them. It's been a month and so far I'm doing good. I pop a few Tums every so often. Lindy
Pip, have the endoscopy done so you will know what is REALLY going on and then start treatment based on the problem. I am truly worried about you because as it stands right now you are playing roulette with your body! Keep us posted..please.Pip, I'm not on any tummy acid drugs. Since staring the sulpha my stomach has been generally fab. Having chatted with my GP we think its due to the fact that the sulpha makes me feel sick and to combat this I eat every couple of hours. This goes completely against my 'norm' in that I'd normally eat a couple of times a day... now I eat about 6 - 8 times a day.
I found probiotics gave me terrible acid reflux so stopped them at about the same time I went on the sulpha. I was also advised by the university herbal doctors that whilst mint tea is good at settling the tummy, too much can have the reverse affect by relaxing the top of the tube too much.
I agree with the girls though, you should get the camera thing down there, if its an option, just to have a look see and as with all the stuff we have to take an elimination process may be the best way to go.
Keep breathing!
When I was in my 20's, oh so long ago, I had stomach lesions and the beginnings of ulcers. I bought (sorry dont know how it's spelled so bear with me) at a health food store, chewable paypiea
Read about it if you can figure out what the heck I am talking about.
Sorry don't have dictionary handy.
LuAnn :)
That book I read that sdbridges uses, Breaking the Vicious Cycle, claims her diet heals diverticulitis, colitis, crohn's and GERD. The problem is you have to give up all grains for a year. The diet looks difficult to follow. But i guess if you're committed enough it can be done! If you try it for a few months, you would be able to get a sense of wether it's working or not.My daughter has Gastrophical reflux with GERD, so she has quite a bit of digesting problems.
There is a nice site with info at http://www.gerd.com/consumer/ that i hope can help you find some answers.
I have IBD and a bad reflux with select foods, i end up with what my husband calls "verps" a vomit burp.
I have to cut out any acid foods like spagetti sauce, milk, cheese, oranges, pineapples, lemons etc. There is a list of what not to have on this site like chocolate etc.
I hope it helps give you some ideas on helping your body get well.
Have you tried The People's Pharmacy website for suggestions? I bet they have some ideas.
I agree your stomach is important, too. My friend with AIDS died when his stomach gave out from the meds. It wasn't his liver. It wasn't an infection. It was just destroyed and quit working. His family said it was horrible at the end.
pip, get fresh ginger root, put it through a juicer and store the juice in fridge.take a tablespoon every morning before you eat or drink anything.This will burn a little going down but it really works.Take this for a week you'll see. &n bsp; thanksJSNM - How horrible does the aloe taste? And would it be safe for Justin to try? (Crohns)
Pip, whatever you do, let us know. I'm really curious now!
Hi Katie, if one has a sensitive stomach and intestines Aloe can cause severe diarrhea. I'd be careful with Justin's history. I know that you're both careful, so I'm just reinforcing that......nag, nag, nag. LindyThanks :) That's why I was asking before I did anything!Pip,
Jasmine Rain is absolutely correct in her statement a ways back.
I've been on a PPI (Prilosec and then Nexium) as maintenance therapy for GERD & diffuse esophageal spasm for roughly 20yrs. Heres another example of a drug that was initially only approved for a max of 14 days trtmt. and never was it to be used as maintenance therapy when it first came out, but thanks to a forward thinking gastroenterologist, I was permitted to use it as such and it has worked for me for 2 decades now.
Now, lets talk about Protonix. When the patent for Prilosec was removed (amid much clamor from it's maker and a sharp little chemical compound maneuver called Nexium to keep the cash cow flowing), I could only get the OTC Prilosec or Protonix. I opted for the Protonix and I don't know what it was about the formulation of this product but it didn't work for me at all. I then called my gastro guy and told him "Protonix be damned, I want the Nexium!". I was getting it directly from the maker through the doc for a time and then received a prior authorization due to failure on the Protonix and have been on it ever since. Stopping a PPI cold turkey is asking for a severe case of acid rebound effect. Wouldn't recommend it.
K.
OK, I'm starting some more research. So far I've come across we shouldn't be on this if we have osteo, cholseterol, liver problems, or antibiotics. Particularly - macrolides. I'm on a macrolide!
http://members.aol.com/bio50/LecNotes/lecnot40.html
Why AP works by interfering with protein synthesis.
http://www.mongabay.com/health/medications/Clarithromycin.ht ml
And the suggestions here are wonderful - Thank you from the bottom of my heart.
I'll write more tomorrow,
Pip
Aloe vera pulp doesn't really have any taste, even the juice is fairly bland. For me its just the grossness of it looking like slime :)
OK - I managed to scare myself half to death so I decided that since I was seeing my AP doc I'd ask for his advice. That's why he's there; right?
Before I go into what he said, I want to comment on some of your suggestions. Thank you all!
Cassandra and JSNM - thanks for the Aloe Vera suggestion. And Cassandra, let us know how the diet works.
LuAnn - I know what you mean, even tho I can't spell it. I'll get some at the health food store. My mom has been on that for years with her IBD and it really helped.
Shykymom - JSNM??? talks about digestive enzymes for help after her gall bladder was removed.
Bubba - thanks for the link.
JJ54 - thanks for the ginget root suggestion. I'll add that in. What is is about my body that dislikes all this health stuff? LOL
LinB - You're right, and I logically know my liver is safe...but there is the emotional side that says something is going to go wrong and...
Katie - thanks for your caring. I really appreciate it.
Now&Then, Wills08 and somebody else??? - I don't think I need an endoscopy, but we should be sure in any of this, so I'm going to get one scheduled later in the year when my deductible is paid off. Can't afford a huge payout right now.
Wills08 - I'll try the snacking idea. It sounds like something that should work. Also I hate mint (unless surrounded by chocolate) but I'll try that too. Have you thought about working your way up on the probiotics? I think our intestines are so 'off' with these diseases that only a little causes reactions. But we eventually get better. Just a thought.
Katalina - your use of the term acid rebound effect really helped with the research. I found a lot of forums where people discussed this and said how they got off them. Hugs!
OK, so...what did the AP doc say???
This guy is quiet. He watchs; gets all the info and makes his descision. He kind of freaks me out - I'm not quiet and quiet people make me nervous. So...I tell him about my little experiment and I expect some sort of "what are you doing!"
Instead, he looks over my chart, gets the dates of when I've been on this stuff, says "your erosions should be fine now, time to wean off'. So, I feel kind of good that we're on the same page; but kind of bad that I didn't talk to him first.
His suggestion was to do evey other day and take aloe! I almost fell off the chair. Then he said do that for 2 or 3 weeks, then every 3rd day, then every 4th day, then 2 X a week, then 1 a week.
It's going to be a long process, but since he ALSO doesn't think I need it anymore....I feel like I'm moving to more 'medicine free'.
Wish me luck!
Wish me luck finding the plant. Sheesh! This is LA. How hard can it be....she says as she's looked for a few days now.
Pip
Alright you have me officially interested in the aloe!!! Google time! I'm just worried about "the runs" for Justin. Hehehe
Let me know how it goes!
Okay, I am wishing you good luck!Pip
I'm in the dark about this subject but I was put on a daily Prilosec as a precaution immediately.
Publix sells the aloe leaves all the time. I kinda thought it was standard. Guess I'm wrong!Well Pippykins, I just did a bit of reading. Make sure you're only using the gel of the plant. If you get any of the inner lining,(sp) thats what will have the laxative effect.
That said....YAY I'M USING IT ON JUSTIN! LOL
Also - what did your doctor say about how MUCH, how OFTEN, all that good stuff. I'm sure that'll be entirely individual, and yes, this will get run by Justin's doc, I'm just curious. I couldn't really find anything relating to the "how much" aspect.
Katie -
I was under the impression when ever I felt 'vurpy'. He did say first thing in the morning...so...maybe I should have asked more??? And I was wondering about the thready stuff...thanks for the info.
Wannabe -
Do you have GERD now? If not, you might do some of your own research on this. I thought it was a mild med, and I know a whole lot of us need it, but I suspected I didn't anymore...then had problems weaning. Kind of like the rubber band effect - it came back worse. Is this the thread that had the post on how the med works and how the body tries to compensate? No, look under Suzanne's post - the title was something like "pip and PPI's". My doc (and these guys on AI that ROCK!) had a lot of suggestions on natural ways to get my stomach to do what it's supposed to do. 2 years ago I was way pro-med. Now I'm like...can I get natural to do the same thing? It looks like a lot of natural stuff really does work. Anyway, when my board certiified rheumy said "aloe", I knew it would work. LOL
Seriously, I left this monster aloe plant in MI because you can't bring fruit and veggies into California. I've been to 3 stores. I'll be going to a lawn and garden place ASAP.
Pip
OK, two lawn and garden places and NO giant aloe veras. Also, none at the Dollar store. I did find a small, rather bruised one at Home Depot so brought it home and hope it grows like wildfire. LOL
Until then, or until I can find a bigger one, 'cause this baby would be gone in 2 days, I'm going to have to buy some caps at the Health Food Store.
Staring to wean Monday morning.
Pip the wuss
Edited for poor sentence construction.
Boy, are you going to have fun when you try to wean!
Most of our meds are pretty bad but we need them. The question is how many are side effects of side effects and how do we make the body healthier so maybe we don't need them.
Pip
I think I tried to wean off of it when I was on 30mg and that was no fun. I had bad pain in my stomach and nausea. But I guess till I find an alternative I don't have a choice. I had to have two esophagus dilations within two or three months.I read your original post. Dude, what's up? You're way to young to have all this crud. Do they know what started all this for you?I guess the docs really don't know. I had the melanoma start around 16. I'm clear of melanoma as of now. I've had to increase to 50mg of blood pressure medicine just to keep my bp under control. I'm sure it's been higher but I've seen it at 160/120. Sometimes I've really felt like I was dying to say the least.I'll respond on your original post - because if we bump it, other people here will jump in and say 'Hi' too!
Pip - I am fairly sure there are 2 different species of the Aloe Vera plant, only one is the medicinal one. Someone else will be able to give the botanical name or a book on herbs or the net will provide it.
My local health food stores have aloe vera juice in a bottle for digestive purposes, that is easier than using the plant, possibly not as effective but worth a try.
Believe it is very effective so good luck.