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Cat's updates

Cat-a-Tonic

Super Moderator
I thought I'd start a thread for updates about myself - I will also still post in the big mega-thread but thought I'd put all the key details in here. (Warning, this may end up being just as long as the mega-thread! I am known to ramble on. ;))

Here's a rundown of everything so far:

Mild symptoms high school and college, possibly even earlier than that. Stuff like "sensitive stomach" and recurrent anal fissures, also recurrent UTIs. Nothing besides the UTIs was ever bad enough to go to the doctor for, and they never ascertained the cause of my frequent UTIs.

Onset of acute symptoms hit Oct 9, 2009. Horrible nausea, weakness, dizziness, diarrhea, abdo pain hit me out of the blue. Symptoms lasted for weeks, was eventually (mis)diagnosed by an urgent care physician as having viral gastroenteritis. Felt somewhat better after getting IV fluids and anti-nausea meds.

Felt more or less okay for several weeks, although never quite felt like my old self ever again. Second round of bad symptoms hit in late Nov 09. Went to GP who thought it was unusual but not unheard of to have viral gastroenteritis twice in 2 months.

Round 3 of symptoms hit in Dec 09. My GP wasn't available so I went to see a different GP in the same clinic. She ordered many blood & stool tests. The only test that came back abnormal was a blood test indicating my sodium was low. I was told "eat a bag of chips and you'll be fine." Blood tests included celiac & thyroid, stool tests looked for bacteria or parasites. All these came back normal.

After having more flare-ups, my GP referred me to a GI. I first saw my GI in Feb '10. At the time he mentioned Celiac and Crohn's as possible suspects.

April '10 I had my colonoscopy. Scope was normal, GI took about a dozen biopsies which also came back normal.

June '10 I had a horrible flare. GI and GP were unavailable so I went to see yet another GP in the same clinic. This doctor was awful - he took one look at my chart & told me that I have IBS and that I "look depressed" and proceeded to offer me several anti-depressants. I was so mad, yelled at him that of course I'm depressed, anyone would be with symptoms like this and no answers! I then put my foot down and demanded to try prednisone. The bad GP agreed on the condition that I also try Dicyclomine (Bentyl), an IBS med. I agreed. Bentyl did nothing for me, and the prednisone worked wonders.

I was on 10 mg pred for 5 days and those were the most wonderful 5 days - I felt euphoric and my symptoms all went away! Symptoms came back with a vengenace after the 5 days were up, and my blood pressure plummeted. I ended up in urgent care again. After IV fluids and rest, my BP stayed dangerously low. I finally googled low BP and found that low sodium is a common cause, and I remembered the "eat a bag of chips" thing, so I had some soy sauce (high in sodium) and instantly felt better. I'm not sure if the pred or a flare caused my BP to drop like that.

I saw my GI shortly thereafter, and he was very upset that I had taken the steroids without consulting with him. He said he'd never give steroids to an undiagnosed person, that it wasn't safe. But when I told him how well the pred worked, he changed his tune. I don't think he fully believed that I had an IBD until I told him the pred worked. He ordered more tests for me, including an abdominal CT (not CT enterography). Again, this came back normal on my intestines (it did have an incidental finding that I have nodules on my liver).

July '10 (I think, I'm going by memory on these dates so I may be a bit off on a couple of them!) I had an ACTH blood test for Addison's disease, since Addison's can also cause gastrotinestinal symptoms and responds to pred. This test came back on the low end of normal and Addison's was ruled out.

Aug '10 I had an upper endoscopy with biopsies. Again, all came back normal, but this meant that Celiac was definitely ruled out.

Sept '10 I had the pill cam. I had very high hopes for this test, but once again the results were normal.

At some point around the same time period that I had the pill cam, I also had an MRI of my liver to check the nodules. They were diagnosed as benign focal nodular hyperplasias and not the cause of any of my symptoms.

Oct '10, one year after onset of acute symptoms, my GI decided to try me on Entocort, which is similar to prednisone but milder, not systemic, fewer side effects, and my GI felt it was safer to have me on it for a longer time. The only side effect I experienced was chronic headaches, which were controlled well by 25 mg of Amitriptyline. I started Entocort at 9 mg for 6 weeks. I tried to taper to 6 mg at the 6 week mark, but I flared up again so my GI put me back on 9 mg for another 6 weeks. After that 6 weeks I successfully tapered, and I stayed at 6 mg for 4 months, making 7 months total.

I successfully came off of Entocort in April '11 and have been in or near remission since then. I've had plenty of other related issues in my near-remission state, including migraines, acid reflux, gastritis, arthritis, bad side effects to meds (specifically Compazine and Hyoscyamine). If I get too stressed or eat the wrong thing my symptoms come back and hang around for a couple of days.

It's been a bumpy road, but I'm finally feeling somewhat well again and am again able to exercise, go out to eat, make plans, and just generally live a mostly normal life. I feel in a way like I'm a success story, that even if you don't get a diagnosis right away, you can still get into remission and live your life and feel well & be happy! I'm hoping the other undiagnosies here can get some hope out of my story. I've been through horrible depression, frustration, exhaustion and devastation with this miserable illness, but there is a light at the end of the tunnel! You just have to keep fighting to get there. :)
 

xJillx

Your Story Forum Monitor
Thanks for sharing you story, Cat. You've been through a lot, and I am happy to hear you are finally starting to feel better. You are a true inspiration to all of those who have not yet received a diagnosis.

I hope you continue to improve each and every day.
 

Astra

Moderator
Yay Our Cat!
That was ace!
Other undiagnosies will find so much inspiration from that! Hope you stay feeling fab for a long time to come.
xxx
 

Crohn's Mom

Moderator
Thank you for putting that all together, and sharing it Cat!
I hope you have continued success with your health, and in the mean time maybe you can get a diagnosis as well!

hugs,
~T~
 
Ditto what everyone else said. Hope you stay feeling well for a long time. But I also want you to get some answers so if you start feeling poorly again, I want them to see something. In any case I hope it's awhile before you feel bad again.
 

Cat-a-Tonic

Super Moderator
Thanks all for reading that monster of a post! ;) I keep thinking of little things to add but I'll try to resist the urge to add even more to the original post. I will add here though that my CRP was a bit high during my non-remission time but nothing freaky - I remember it being 17 at one point. The last time I had my CRP done, about 2 months ago, it was 10 which my GI said is normal! So another good sign that I'm headed into or already in remission. :D
 

allieinwonder

Moderator
Wow, what a history Cat! I didn't know the full details until now...I'm sorry you are going through all of this! I truly hope you are able to show proof to your GI soon so that your undiagnosed days are over soon. You truly deserve it!
 

DustyKat

Super Moderator
Wow Cat, when you put all together like that it is mind blowing!

Thanks so much for putting it all down. You are one amazing and strong lady! :)

Thinking of you, :hug:
Dusty. xxx
 
that great cat, i am very glad to hear good news. i hope you will get diagnosised soon. and stay in remission for a longggg. time . best wishes

scott
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Personally Cat, I hope you never need to go back and remain the undiagnosed yet asymptomatic wonderful, caring lady you are right now:) I have no doubt that should the need arise, you will need no prompting to seek care.

PS-I'm glad you did this! That monster thread is reaching novel dimensions and it's become a little (understatement of the century) daunting to find anything specific in there!!
 

Cat-a-Tonic

Super Moderator
Mark, you sound just like my GI! When he put me on Entocort, he said he was going to give me a (much needed) break from all the testing and try to get me some relief from my symptoms, and ideally put me into remission, and that getting a diagnosis would be on the back-burner for now. I was skeptical that I'd stay in remission after coming off of Entocort, especially given that I had an average of 1 or 2 bad days per week while I was on it. I'm actually doing a little better off of Entocort than I was while I was on it! I'm not on any maintenance meds at the moment, only on Omeprazole (Prilosec) for my acid reflux and Amitriptyline - my GI thinks that Amitrip will help keep me in remission, although again I'm skeptical. But, so far so good, and my GI has said he doesn't anticipate me having another major flare for quite awhile. The bad news is, he's not going to do further testing (except for blood work) unless or until I do flare up again. So it's either remission or further testing/possible diagnosis - I'm happy to stick with remission for now! I'd like answers in the future, but as long as I can keep feeling this well I'm pretty good with that. It's hard to be super optimistic, given that I know flares can hit out of the blue, and sometimes I do find myself waiting for the other shoe to drop, or just wishing I had a name for the slumbering monster in my guts, but for the most part I'm doing well and enjoying it. :D
 
it is good news that you are doing so well cat. keep it up and you will be fine. your finally in remission. and that is very good news. i hope it stays that way for you.best wishes

scott
 
Thanks for sharing that Cat. It really helps seeing people put their stories together like that. I hope you stay in remission too. This in and out of hospitals and GP's is a nightmare if they cant diagnose you. So frustrating. Stay happy and well :)
 

Cat-a-Tonic

Super Moderator
Another update on me: I "graduated" from physical therapy today! I've been going to PT every few weeks for my hip arthritis. My therapist feels that I've made good progress and that I'll be able to continue on my own at home without needing to see her (she's about to give birth any day now too so I couldn't see her anymore even if I wanted to, although she did give me the option of seeing another therapist in her absence). My hip has been feeling better and better since I've been going to PT, and my therapist thinks that I'll continue to improve as long as I keep up with the exercises. So, hooray! :D
 
Congratulations that is good news. So good to hear that things seem to going well for you at the moment. Long may it last!:congratualtions:
 

DustyKat

Super Moderator
Fab news Cat!!! May it keep on keeping on hun!...:thumleft:

Onwards and Upwards!

:mademyday:
Dusty. xxxxxxxx
 

Cat-a-Tonic

Super Moderator
It's been awhile so I thought I'd give an update. I'm still in remission and it just keeps getting better and better. I've had a few tweaks in medications and am now feeling better than ever. I know I'll never be 100% like I was before I became ill, but I'm about 99.99% nowadays. I have to avoid some trigger foods and stress still can knock me down a bit and I will always be aware, in the back of my mind at least, that I've got an illness. But otherwise I'm great. I'm still not fully diagnosed, but both my GI and GP have unofficially said it's IBD, they're just not sure which type (Crohn's or microscopic colitis are the main suspects). They treat me as though I have IBD and I respond well to those treatments.

If anybody's curious, here's the list of meds and supplements I'm currently taking. These meds are being very good to me so I thought I'd share:

Prescription meds:
Asacol (to maintain remission of IBD)
Nexium (for GERD - I recently switched to Nexium from Prilosec and am so glad I did, the Nexium works far better for me - I just take one first thing in the morning and I don't reflux at all unless I eat really greasy fried food)
Zantac (also for GERD - I take this one at bedtime so that I don't reflux while I sleep as my 24-hour Nexium starts to wear off)
Amitriptyline 25 mg (to prevent headaches & migraines and to help me sleep, this one is also taken at bedtime)
NuvaRing (birth control)
Zofran as needed (for nausea - I rarely need it these days!)

Supplements:
Psyllium Husks (This has worked wonderfully for me. I take 1 teaspoon a day and it's reduced the # of my bathroom trips significantly. Even in remission I was having BMs 4-10 times per day, now it's 1-3 times per day because of psyllium!)
Vitamin D
Vitamin B12
Calcium
Cranberry capsules (to prevent UTIs)
Biotin (to prevent hair loss)
Folic Acid
Bromelain
Fish oil/Krill oil (Krill oil is expensive so I alternate between that and the less expensive fish oil)
Ginger capsules (again for nausea, and again I don't really need them but do take them daily as a preventative)

I am also trying to eat healthy and I exercise a minimum of 3x per week, mainly weight lifting with a little cardio and some yoga, and walking with my dog. And for the first time in my life I really enjoy exercise - I always hated it and thought exercise was tedious and hard before I became ill. Now that I know what it is like to lose my health, I want to do everything I can to keep myself as well as possible and I actually look forward to working out and I enjoy it! I feel great most of the time and just generally am loving remission. I recently went through a bit of a rough patch where I was on steroids (hydrocortisone suppositories for hemorrhoids) and was having a lot of stress so it was taking a toll in the form of me not sleeping well and not feeling as well as I had been, but I am off the steroids now and the stressful situations are resolving one way or the other and I'm doing really well again.

So don't lose hope, fellow undiagnosies! Remission is achievable, even when you're undiagnosed, and it's also possible to maintain remission and feel well for a nice long time. I've been in remission for probably close to a year now, it was about May 2011 when I started feeling consistently well so I was either in or very near remission around that time. I hope this can give at least one undiagnosed person some hope for the future. Remission is amazing and I hope everyone can join the remission club very soon if you're not already there! :)
 

Cat-a-Tonic

Super Moderator
Update on me: I recently underwent a 24 hour pH impedance test as my GERD has been steadily getting worse, in spite of me taking meds for it (first Zantac, then Prilosec, now Nexium - both Prilosec & Nexium started out working great, but slowly lost effectiveness). So I had that test, which involved them inserting an NG tube which had sensors in it. I had to keep that evil tube in for a full day and night, and I was to take my usual meds (including Nexium) but I was also to eat my reflux trigger foods and I had to exercise as that always makes me reflux. It was not a fun day!

I just got those test results back, and the results seem to be pretty bad! (On a plus note though, finally I had a test where I got some real results!) My results say:

"There was a total of over 300 minutes of acid refluxate into the esophagus. The percent times were therefore quite high at 4.4% in the upright, 63% in the supine, and a total of 27.6% with normal being less than 1.3%. Total episode was 26 with the longest lasting over 300 minutes. Impedance; however, revealed significantly less total time. The nonacid reflux time was only 4.3 minutes. There was a total of 48 reflux events, which is just slightly above the 95th percentile of normal; 27 events were acidic, 21 events were nonacid, 21 of 48 reached proximally."

I think I understand all of that (Dusty or someone more knowledgeable, any input?). It seems to be saying that I reflux a lot of the time especially when I'm lying down and it's mostly acid and not so much nonacid. My hubby thinks that 95th percentile means "almost normal" but I think it means 95 percent above what is considered normal so therefore super bad and abnormal... is that right? Also, I don't know what proximally means, anybody know? Of course I had to receive these results in the mail on a Saturday so my GI isn't around to answer questions until Monday at the earliest, so hopefully someone reading this can help. Anybody?
 
I agree with your interpretation that 95th percentile above normal is very abnormal, with most of the events involving acid in the supine (lying flat) position.

Please keep us updated after you talk to your doctor. My GI wanted me to do this test, as I also struggle with severe GERD and there isn't a single med that has ever helped. And I've tried ALL of them. Diet changes seem to have mostly eliminated my GERD symptoms though. I haven't had any issues for a couple of months now.
 

DustyKat

Super Moderator
I am not in the least statistically minded. :lol:

I have dealt with percentiles and standard deviations when applied to intelligence quotients but not in regard to medical conditions but I will give it a shot. In my opinion your thoughts are correct Cat. When talking in terms of percentiles there is a norm and then deviations either side of that. To be at the 95% percentile means that the severity of your GORD is 95% worse than the rest of the population. For example the norm may be 50% with those at 50% experiencing perhaps moderate symptoms. Those under 50% have reducing symptoms until you reach a point that GORD is not present and those above 50% have increasing symptoms.

Please don't take my interpretation as gospel though!

What proximally means in this case is how far the reflux extends up the oesophagus. In your case it extended the full length of the oesophagus 21 times.

HTH!
Dusty. xxx
 

Cat-a-Tonic

Super Moderator
Thank you Dusty! That does help. So if I'm understanding what you're saying, 50% would be the median, some acid reflux but not too bad. 0% would be no reflux ever, and 100% would be the worst reflux all the time. Since I'm at 95%, I'm pretty darn bad. Thanks for answering the thing about proximally too - so I refluxed up basically into my mouth then 21 times in 24 hours?? It didn't feel like it but maybe a lot of it happened when I was sleeping. The sad part is, I tried to sleep normally with the stupid NG tube in, but I just couldn't lie flat with that dumb thing, it was so uncomfortable so I propped myself up on a bunch of pillows, which usually makes my reflux less awful. So I hit 95% and the worst of it while I was lying down, even though I wasn't fully lying down! Eek!

KatyBuckeye, I will update in this thread once I've talked with my GI about what this means for me and where I go from here. I've made some dietary changes too but seemingly benign things still set off my reflux - bananas even give me the vurps! I had a really bad bout of reflux and gastritis last week, I ate spaghetti which is usually fairly safe for me, but the tomato sauce really set me off and I had gastritis pain for days. The gastritis is worse than the GERD in my opinion (although GERD is certainly no picnic either). I've been eating super bland foods ever since and am kind of terrified to eat anything with flavor right now. My stomach is such a jerk! Anyway, I'm rambling again. I will keep you posted on what my GI says. If you decide to do the pH impedance test - be warned, it's not pleasant. Having an NG tube in for a full day, having to sleep with it, and particularly having to eat trigger foods with it it just miserable. Swallowing anything with that tube in caused pain from nostril right down to stomach! My sinuses went nuts too, they did NOT like having a foreign object in my nose and as a result my nose dripped constantly all day. I literally went through a whole box of tissues that day. But, I do think it was a worthwhile test to have and I'm glad I got a worthwhile result from it. I really wouldn't want to do it again though! And at least I didn't have to do prep or drink anything nasty for it. Anyway, I hope your GERD continues behaving itself, and I'll keep you posted on what I find out.
 

DustyKat

Super Moderator
Essentially yes Cat. I guess it doesn't really matter where the norm is set because your result still places you at the 95% percentile based on their criteria. They may set it up like a bell curve so the bulk of sufferers fall at the 50% and then there is drop off either side of that or they may set the norm at 0, with 0 being no symptoms, and rise from there.

Yes, 21 times in 24 hours. The results will be skewed due to the fact that you slept in a propped up position and that action is a well known treatment, amongst the medical profession, to help reduce reflux.

Dusty. xxx
 
KatyBuckeye, I will update in this thread once I've talked with my GI about what this means for me and where I go from here. I've made some dietary changes too but seemingly benign things still set off my reflux - bananas even give me the vurps! I had a really bad bout of reflux and gastritis last week, I ate spaghetti which is usually fairly safe for me, but the tomato sauce really set me off and I had gastritis pain for days. The gastritis is worse than the GERD in my opinion (although GERD is certainly no picnic either). I've been eating super bland foods ever since and am kind of terrified to eat anything with flavor right now. My stomach is such a jerk! Anyway, I'm rambling again. I will keep you posted on what my GI says. If you decide to do the pH impedance test - be warned, it's not pleasant. Having an NG tube in for a full day, having to sleep with it, and particularly having to eat trigger foods with it it just miserable. Swallowing anything with that tube in caused pain from nostril right down to stomach! My sinuses went nuts too, they did NOT like having a foreign object in my nose and as a result my nose dripped constantly all day. I literally went through a whole box of tissues that day. But, I do think it was a worthwhile test to have and I'm glad I got a worthwhile result from it. I really wouldn't want to do it again though! And at least I didn't have to do prep or drink anything nasty for it. Anyway, I hope your GERD continues behaving itself, and I'll keep you posted on what I find out.
The unpleasantness of the test is the reason that I've refused to do it. I can't stop gagging even thinking about it. The one time I had an NG placed, I had a panic attack. And the GI doc failed to be able to explain how the results would actually help me. I already know that my GERD is pretty bad and I'm unresponsive to treatment...so I just can't understand how they will be able to take the results and translate it into something that will help. So, I am very interested in hearing how your GI explains it to you and if they are able to find something to help based on these results. Good luck!
 

Cat-a-Tonic

Super Moderator
KatyBuckeye, yes, it was no picnic having the tube put in. I didn't gag although it was unpleasant. The worst part of having it put in was pretty specific to me - I broke my nose when I was a kid and it was never set right, so as a result it healed crooked and I've had sinus issues ever since. I think I have a deviated septum. My right nostril is larger than my left, and I do most of my breathing through the right nostril, so I thought it made sense to try to put the NG tube into that side. The nurse tried 4 or 5 times but the tube kept hitting something (my septum or part of my sinus?) and it wouldn't go further. She kind of tried jamming it in but it just wouldn't go, and by the 4th or so time, tears were just rolling down my face. It really sucked! Fortunately she got it in on the left side on the first try with no trouble. So now I know, if I ever have to do an NG again, to do it on the left! But it was really not fun when she was trying to get it in on the right, that for me was the worst part.

I do hope the results give my doctor something to work with. He mentioned at my last appointment that he suspects something like either a hiatal hernia or possibly my stomach isn't emptying properly or maybe my esophagus isn't allowing food into my stomach correctly. So I suspect maybe more tests are in my future to look for those things. I don't know if there's medications for those or surgery or what. Hopefully I'll find out soon.
 

DustyKat

Super Moderator
Do you have a follow up appointment or will you be speaking with the GI over the phone?

Either way i hope he is able to give you a solid plan of action and you find lasting relief! :goodluck:

Dusty. xxx
 

Cat-a-Tonic

Super Moderator
Dusty, I don't have an appointment super soon - I see my GI every 3 or 4 months, I last saw him in July or August and my next appointment is sometime in November. So I can hold off until then to see him in person if need be, but I will definitely be communicating with him over the phone or email sooner than that regarding the test results. I emailed his office when I received the results in the mail (I had emailed him late last week too asking where the results were and reminding him that my GERD is steadily still getting worse). I got a reply from his nurse today, saying that my GI is reviewing the results and that he will contact me soon. So I'm just waiting for his call or email and will go from there I guess!

It's kind of funny, my dad hasn't had any strong feelings one way or the other since I've been ill. He's just kind of "meh" about everything and I think that might be partly because nothing had been found on any tests. So on facebook I posted about these results and how I finally not only got a result, but a very strong result. My dad called me last night and said he saw my facebook post and he is so angry and wants to yell at my GI! I got a strong result on a test and a strong reaction from my dad too. I told him not to yell at my GI, that won't do any good or solve anything. It's kind of funny though that suddenly my dad got angry because he realized I really *am* ill! My father sometimes has a delayed reaction to emotional things (he wasn't sad when an old friend of his suddenly died, but he got very sad about it a year later) so I guess it took him 3 years to get upset about his daughter's ill health. :p Things just got real.
 
Good lord, Cat! That sounds awful! I wonder what they'll do about that. And strange that nothing showed on your endoscopy.

I agree with you and Dusty and others about the 95% thing. My son is always above the 95% in his height and that means he is wayyyyyy above average. And I know that if you score in the high percentiles on academic standardized tests, that means you do above average work. Your interpretation has to be correct; your test was so not normal!!
 

Cat-a-Tonic

Super Moderator
May, I think the timing of the endoscopy was just slightly off. I had my upper endoscopy around August or Sept 2010. I started experiencing GERD symptoms around December 2010, and it was much more off than on back then. I would have a reflux episode, then a month or 6 weeks would go by before the next one. Gradually the episodes got worse and closer together. Prilosec worked great at first. My GP didn't want me on prilosec long-term if it could be avoided, so he asked me to try Zantac instead. Zantac did nothing and I had some bad episodes while on it, so it was back to Prilosec. But Prilosec didn't work quite as well and slowly lost effectiveness, so they bumped me up to a double dose, which worked okay for awhile until that too lost effectiveness. Same story for Nexiumnow. I experience reflux symptoms every day now and I'm on Nexium and Zantac (I still don't think the latter does anything, but my GI had hoped it would help keep things in check while I sleep, so I take it before bed - my test results show that I reflux like crazy when I'm lying down though so now I know Zantac is doing nothing!).

So long story short, the endoscopy was too early to catch anything. I suspect I have a hiatal hernia which must have formed shortly after my endoscopy. I think that I have grounds to ask my GI for another endoscopy now. I'm not sure though if I want to do more testing or try more meds or what my other options would be besides those two things. I suspect surgery may be in my future if I have a hiatal hernia and my GERD is this bad because of it. Don't know though. I'm scared that I'll blow through all the GERD medications like I've blown through Zantac and Prilosec and Nexium - then what? I try to eat a pretty good diet, as good as GERD and IBD will allow anyway. My two GERD food vices are tomatoes/tomato sauce, and chocolate. I've already told hubby I'm cutting wayyy down on those two in an effort to feel better. I had a horrible week last week with GERD and gastritis being just terrible, so I know I need to eat better. But sometimes it seems like whatever I eat, it's going to cause GERD issues anyway. I reflux plain water when I exercise, can't have anything else in my stomach at all (I once tried drinking gatorade instead of water when I was working out - BIG mistake, I nearly puked all over the treadmill and could not continue exercising). So yeah. It's bad and I don't have answers right now on how to make it better. Just have to wait for the GI to get back to me.

Okay, on a related but slightly silly note, the bottle of Tums says "do not take more than 10 Tums in 24 hours" - who do they think they're kidding! Ha ha :p (I have a co-worker who has UC, and we always joke around about our illnesses - as I have told him a few times, if I can't laugh about my broken body then I'm surely going to cry!)
 

Cat-a-Tonic

Super Moderator
Thanks May, I'll be interested to hear how you do with it. I've read things here and there on the forum about Manuka honey but haven't tried it yet myself. The next time I am at the health food store, I'll see if they carry it. I'm about at my wits end so I'm willing to try anything at this point! On that subject, my GI still hasn't gotten back to me (I emailed his office on Saturday, Monday, and yesterday but still no reply and it's now Friday afternoon so I guess I have to wait until Monday at least). So since I'm not getting any answers from my GI, self-treating is the way to go for now! I don't have much money at the moment, and I presume this Manuka stuff is expensive, so I'll have to wait a bit until I can afford it. But I will give it a try at some point for sure, it sounds promising.

On the subject of self-treating, lately I have been trying Gaviscon, taking a swig of it at bedtime to try to keep my stomach contents put. I felt notably better the first two mornings after taking it, but after those two days I now feel pretty much the same as I did before and I'm sure I'm still refluxing at night. I guess it's just like every other reflux med I've tried, worked great at first and then lost effectiveness - the other meds at least worked for longer than 2 days before quitting though!
 
Hi Cat, I have had very bad GERD and esophagitis. It was absolutely horrible. I was put on Aciphex which really helped, but it took a good 7-10 days before it started to help with the pain, in fact it burned like the dickens when I took it those first few days and it hit my stomach. My diet changed so drastically. I went on a total bland diet, no spice at all. No citrus, no acidic foods. No tomatoes!!! Very bad. No dairy. No alcohol. No carbonated drinks. No grease, not even to fry something in the pan like eggs. Even butter on noodles was too greasy. Nothing with crumbs, no cookies, crackers, chips, toast etc. All of these things are very bad. No onions, garlic, etc. I basically lived on small portions of potatoes, rice, chicken and I had a tiny bit of peanut butter and manuka honey on tortillas. The manuka honey to me was key in getting the GERD under control. I really believe in the healing properties, which is why I am having a problem with believing it is bad for Crohn's because of the inflammatory reasons, but that is a different story/thread. No bending over, no propping yourself in half in bed with pillows, but instead raise the back end of the bed with risers or something. It took about three to four months before I could start eating somewhat normal again. I will always have GERD/esophagits issues if I am bad for too long. Like I can never have pasta and tomato sauce, wine and chocolate in one day or I will pay greatly for about a week. I guess, luckily my Crohn's will keep me in check with that now. Sorry to ramble, but I just wanted to give you a few pointers, and you might already know them, but I wanted to chime in. Oh, and don't eat at least two hours before bedtime. Hope you get some meds to help start getting the GERD under control. I still take Zantac, 150mg in the am and pm when I am having GERD issues, but you need something stronger right now I would think.
 
So glad to hear from someone it's worked for. How do you take it? I've been taking it with green tea bc I heard that was a good way to do it.

I don't know how much help my experience will be since I rarely actually feel any reflux. But the idea of silent damage happening isn't one I like to think of, so if this helps, then yay!!

It sounds like pretty amazing stuff, and yes, for honey it's expensive. Compared to meds, on the other hand...probably depends on one's insurance.

Whatever you find, I hope you get some relief soon. That sounds miserable.
 
The honey is ridiculously priced. When I first started purchasing it back in 2008, it was only $9 a jar and now it is almost $30. What the heck? Needless to say, I don't use as much now because it is too pricey, only when the GERD is bad. I just put it on bread or just take a spoon of it, or put it in my morning smoothie. When I had it years ago, I ate it with peanut butter on tortillas because even bread was too crumbly. When my GERD is bad I can't do tea or coffee, so I am not sure about putting it in tea, although it sounds good.
 
Location
NY
Hi Cat. I hope you get some answers and relief. I must say that I am in your husband's camp for the 95%. I read it like you are at the very high end of what is considered a normal range.
 

Cat-a-Tonic

Super Moderator
*Sigh* So, I am playing phone-tag with my GI. He has looked over my results and as soon as he calls me back, we'll go over what the results mean and what my options are. I'll definitely ask for sure what the 95% thing actually means, and I'll ask about manuka honey too to get his thoughts on that. I am also planning on asking him, if we can get my GERD under better control, will that make me absorb my Asacol better? I sometimes pass full, undigested Asacol tablets (not just the shell, the whole thing). And when my GERD is worse, I seem to pass more undigested tablets than when my GERD is relatively quiet, and I know Asacol only releases its medicine at a certain point (when pH reaches a certain level) so I think my GERD is messing with that. Anyway, just a quick update to say I should have more answers soon and I'll keep everyone posted!
 
There is a supplement called deglycyrrhizinated (DGL) licorice. It comes in chewable tablets and it does not taste like licorie (important because I hate the taste of licorice). It helped me tremendously before my diet change. You may want to check it out.
 
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