Acid reflux post gallbladder removal

Hi Dawn - I am sorry that you are having these problems too. I was in England for nearly three weeks (I am a Brit) and really dragged myself round which is a first for me - I love to visit home.

I went back to the Dr.here last week and we went over everything, all my old tests and she decided to do a complete ct scan from top to bottom of abdomen - to check it all out, hiatal hernia, stomach, liver, etc. Anyway I await the results.

What you said makes a lot of sense. I had been having these problems on and off for 10 years but the pain between the shoulders (which is apparantly epi-gastric pain) has got worse since the operation and in the last couple of weeks it has been awful. If this is not something more serious then my thinking is this:

As the ejection fraction of the Gallbladder was only 27% (which I take to mean that it was only emptying at a rate of 27% - which is low) then the excess bile was going straight into the system causing the episgastric pain/heartburn/bile reflux symptoms. Now that the GB has been removed the bile (more of it) goes straight into the disgestive system causing even more of the episgastric pain/heartburn/bile reflux symptoms.

I cannot remember whether it was on this blog or another that I read about someone taking erythromycin for bile acid reflux - I have googled it and I can only seem to find articles from medical textbooks and textbook cases which are a bit complicated!

I will keep you posted. Meanwhile stay in touch and maybe we can find out some more information that will help us both. Take care and I am praying that they do not find anything sinister on the CT scan.

Carolyn

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Hi Carolyn,

I hope everything comes back OK with your CT scan. I have an appointment with my GI on Friday and hope we can figure something out. I will ask him about the erthromycin. Please keep in touch and let me know how you do. There has to be an answer out there for us.

Dawn
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Hi Dawn -

I found this site about a month ago and I am sending it to you. It will not make you feel alone. I hope that you find it useful - it is quite long. It is like this one and has all sorts of different people like you and me complaining of all sorts of different symptoms. See if you find anything useful on it.

Strange symptoms/pains, months after gallbladder removal

I will keep you posted and good luck on Friday with the GI guy.

Carolyn

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Dawn -

Just thought I would send you this webpage too. It is a bit complicated but seems to make sense to me. It is about the erythromycin.

Duodenogastric reflux after biliary surgery

 

Carolyn

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Hi Carolyn,

Thank you so much for the link. I have been trying to research a bit on my own, I have come across some evidence that links erythromycin to cardiac events. I guess like Propulsid and Zelnorm which were withdrawn from the market. Maybe that is why it is not widely used. I am still wondering about Actigall myself. One of the indications for use is to thin bile and help it flow better. Some doctors note its use post cholecstectomy.

Tomorrow is my appt. with the GI and I am loaded with questions.

I hope you are hanging in there.

Take care,

Dawn
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Carolyn,

I am back from the GI with no answers. He says if the Questran is not working, stop taking it. He believes my problem is bile, but thinks it is too soon after surgery to worry about and that it may resolve itself. That certainly doesn't help me now. Too early to talk about other medical interventions. So......

I live near Dartmouth and need to go there anyway since a small stomach nodule was found during my endoscopy. My GI is not sure what it is, so he thinks I should have a biopsy done there. Maybe they can help with this bile problem too. More to worry about. And I just turned 50 this year!

Hope you fare better. Keep me posted.

Dawn
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Dawn

How frustrating for you - I feel your pain but maybe together we can get this sorted out! I am very happy that my ct scan came back negative - as I was thinking it could be a tumor.

My MD has ordered blood work which includes B12 and Cortisol and one other test. I also asked for blood sugar levels as mine had been high before (despite the fact that I am not heavy). I will do the bloodwork and go and see her next week.

Meantime I am not taking any meds but I am drinking aloe juice 3 x a day, taking some herbal drops Dr Voegel's Centaurea which I bought in the UK (I am a Brit) and also DGL (licorice). I have eaten better this last day or two and slept better - though that is probably because a. I was so tired, and b. because I am really trying to eat to try and gain some weight!! I even had some wine - and haven't for ages.

I think it is bile too and hope that it clears up for both of us. I will keep you posted on the blood work, and I will also ask Dr L if she will prescribe erythromycin if things do not improve. I am not one to take meds lightly but will do anything to start feeling better. Sorry to hear about your polyp I hope that all goes well.- I cannot see all of your last post as I am writing this so I hope I have not missed anything. I am 58 bythe way!

Good luck and talk when I know more.

Carolyn

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Carolyn,

How wonderful that everything came back alright with the CT scan. One less thing for you to worry about. I feel like I opened Pandora's Box now, and I just want to shut it back up. I am a bit worried about the polyp, but I have to concentrate on one thing at a time or I will go crazy.

I am glad to hear you are eating. I didn't eat much of anything for a month and lost 12 pounds. I am still eating bland, non-fat foods, but I am eating, so that is an improvement.

Tell me about the aloe vera juice. Is it helping? You are off all of the meds? Did the PPI's help at all? I tried taking a Pepcid AC the other day and thought I felt better, but it may just be desperation and the placebo effect. I told the Dr. this and he said who cares? As long as you think you feel better. ARGH!!!! It is so frustrating that no one seems to know what to do about the bile. They have acid reflux down, you would think that although this problem is uncommon, it does happen, and they would be more helpful.

Keep in touch and let me know how it all goes. If you have any brilliant ideas or find out anything please pass it along. I wish you well and hope this pain all becomes a distant memory for both of us. We are too young to be out of commission so soon.

Dawn
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Hi Dawn -

Well I can quite sympathize with the polyp - I had one in my gallbladder (the radiologist put it bluntly and said it was a mass) but it was a benign polyp. I wish i could say don't worry - but if you are anything like me you will worry until you hear it is nothing. It probably is nothing but at least they are going to check it out and that is a good thing. I will say a prayer for you that it is nothing!

Talk about Pandora's box I know what you meant. Having done about 2 + weeks of first Nexium then Protonix then Prevacid and then at the same time taking any of the following: Milk of Magnesia, Tums, Maalox, Bicarbonate of Soda, - all of which did not seem to help - I realized that I had to back off this cocktail. When I saw the Dr last and she prescribed the CT scan we decided that the Acid Reducers were not working so I stopped taking them. Since then I decided to go more natural and see what would happen.

So I am taking

Lily of the Desert - Aloe - stomach formula. There are lots of aloes out there but this had added soothing ingredients. The one thing that it does is to coats the dig. tract and soothes and puts back healthy bacteria. I have just started taking a probiotic (like acidopillus) - my chiropractor said that putting the friendly bacteria back into the gut was very important. He also recommended taking Borage Oil (it is one of the omega 3's). It acts as an anti-inflammatory which is why it is good. I break open the gelcap and swallow the oil (yuk) but as an anti-inflammartory - it must be better than Advil for the stomach I figure. I also take the DGL - Dycglyrrizhed Licorice. It also soothes the stomach lining and the dig. tract and it has glycine in it which is an amino acid which I believe is also meant to be good for the GI tract. The final thing that I take is Centaurium which is a herbal extract made my Dr. Vogel. I have just found some online in NY.

I still have the symptoms but I hardly dare even say that they are getting better - because when I do - then things get worse. But I will keep you posted. I have been on this regime for about 6 days. I am eating better and feel hungrier. I went from 124 to 112 and am 5'4". Way too thin for me.

I will keep you posted as to whether this is continuing to improve. What made me start the Centaurium (or Centaury as it is also called) is that it says in the blurb:

This is one of the stomach bitters. Its bitterness triggers secretaion of digestive juices in the stomach, improved the digestive process. Use for indigestion, heartburn, hiatus or an acid stomach. As I tend to believe that I am suffering from bile reflux rather than acid reflux (otherwise why would the Acid Reducers not make me feel better) that is why I thought I would give it a try. Like all these things they take time. The aloe would not harm. I don't know how much you are into natural health - some people are and some aren't. Anyway keep in touch and I will let you know how I am doing on this.

Take care. Sorry this is so long.

Carolyn

If you are into natural then a couple of good websites for cheap prices are Vitacost.com (they do DGL, Probiotics, and Borage Oil - I use the NSI brands) ohsonaturalinc.com does Bioforce - Dr Vogel's herbs.

The aloe vera that I used I found at my local health store. If you go locally and decide to but Aloe - then check the back of the bottles to see which has the most beneficial ingredients added.

Good luck. C

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Dear Carolyn,

Well I thought foolishly I was feeling better and last night I also foolishly attempted to eat a salad. I spent all evening in pain, with nothing helping. I started Prilosec again yesterday x 2, but I think like you it is bile reflux. My doctor has essentially discharged me since he has no answers, so I guess I am off to Dartmouth to follow up on the nodule and this problem too. Who know how long it will take to get an appointment. Thanks for the words of encouragement regarding the polyp. But you are right, I can't help but worry and basically my GI said no matter what, they will probably cut it out. So that means a partial gastrectomy. And bile reflux is definitely a complication of that surgery. As if this wasn't enough. The gall bladder was supposed to be a piece of cake. Just get it out before it causes problems and then you can eat anything.

If Prilosec doesn't help within the next few days, I think I will stop taking it too. I never had any faith in natural remedies because I always believed if they worked, the pharmaceutical companies would have figured out a way to market and make money off of them. However, I just moved to Vermont last year from Pennsylvania, and Vermont is a hot bed of natural and holistic healers, health and products. At this point I have nothing to lose since I apparently am too much trouble for the only gastroenterologist in town.

I am glad you are feeling better and hope it continues. Please let me know if you have success from your new regimine. I appreciate all of the information and will go tomorrow to look for some of the products.

Thanks again.

Dawn
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Hi Dawn -

How discouraging for you. It will be good to have the polyp looked at (biopsy taken) but I hate the thought of you having to have another operation. Let's hope that it is nothing or that they can remove in endoscopally (whatever!).

I did not feel so good yesterday but did not eat so well on Friday evening either including some wine. However I feel somewhat better than I did last week and I think that my tummy is not as active as it was it was so rumbly. I think that the acid reducers caused me more problems than not. Whether these natural remedies are helping I am not sure. Certainly if you are in a good area like you say Vermont is then a good healthfood store may have something helpful and soothing. If you do go ask who would be the best person to ask about your digestion - some people know alot. As far as natural vs. drug companies - as long as the drug companies can make money inventing what they do then they have nothing to lose so I guess that is why they don't do much. Also it would cost just as much to do all those double blind studies over the years that they do.

I thought of going to www.mayo.com (the mayo clinic website and asking about bile reflux - though I haven't done it yet. It might be a good resource for us to look at. They are apparantly an excellent resource and I think will answer questions.

Meantime I am going to get my bloodwork done on tues and guess see the Dr when it is done.

I hope that you start feeling better. Does eating anything help or does everything make you feel either sick or sore?

We'll get to the bottom of this together!

Take care.

Carolyn

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Hi Carolyn,

I am sorry to hear you weren't feeling well. My days are like that too. Just when I think I might be turning the corner, I let my guard down and eat something I used to love (like salad) and I am back to square one. Basically I am afraid to eat and once my stomach settles down, I have to force myself to eat since eating seems to set the cycle in motion all over again. Basically bland foods are fine, especially bagels and kefir smoothies. I try to eat them once a day for nutrition. Kefir, a frozen banana, a few berries, whey protein and some ground flaxseed. I am worried about my diet because I have been eating healthily for years, salads, fish, chicken, whole grains, fruits, nuts, and wine. And now I can only eat things like bread, starchy vegetables, grilled chicken, and pudding. Bluck! I am losing so much weight, which I would have loved in my 20's, but now that I am 50, I am thin enough. But I have no appetite.

As far as the medicines are concerned, I decided to go back on the Questran. It seems to help a bit and as long as I watch to make sure I don't become constipated, I think it is a pretty benign drug. I keep going back and forth on the PPI's. Again I have been doing exhaustive research (like you I am sure) and from what I can figure out the reason Dr.'s try the PPI's is because although they do nothing for bile reflux, if you have reflux at all, the PPI's reduce the entire acid volume in the stomach and keep everything from refluxing into the esophagus. As you probably know, refluxed bile is thought to be causitive of Barrett's Esophagus and can even be silent. So not in our cases, but in some, they can be refluxing bile without knowing it and causing permanent damage. I read a study that says Achiphex was as effective for bile reflux as Carafate. I have some samples here and I may try it along with the Questran. Dosing is a problem though because Questran binds to everything. I also bought myself some Mylanta which has aluminum in it, this is also thought to bind to bile.

Maybe we can compare our experiences with our new plans. The conclusion I have come to is that there is pretty much nothing the doctor's can do to control bile reflux short of surgery and that is iffy at best. We can only pray that our reflux is a complication of GB surgery and our bodies will adjust and we will be fine.

Keep in touch and let me know how things go with the Dr. I am going to call Dartmouth this moring and start my new nightmare. I sent a question into the University of MD, but wonder if I will get a response.

Take care,

Dawn
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Carolyn,

Here is the abstract of the study I was telling you about if you are interested.

Post-cholecystectomy alkaline reactive gastritis: a randomized trial comparing sucralfate versus rabeprazole or no treatment.
Original articles

European Journal of Gastroenterology & Hepatology. 15(9):975-979, September 2003.
Santarelli, Luca; Gabrielli, Maurizio; Candelli, Marcello; Cremonini, Filippo; Nista, Enrico C; Cammarota, Giovanni; Gasbarrini, Giovanni; Gasbarrini, Antonio
Abstract:
Objective: At present there are no well-established pharmacological approaches in the management of post-cholecystectomy alkaline reactive gastritis. The aim of this study was to assess the effect of sucralfate versus rabeprazole or no treatment on dyspeptic symptoms and endoscopic/histological signs in a population of patients with a history of cholecystectomy and evidence of alkaline reactive gastritis.

Methods: Sixty dyspeptic patients fulfilling the following criteria of inclusion took part in this study: (1) a history of cholecystectomy; (2) no use of anti-inflammatory steroidal and non-steroidal drugs, or abuse of alcohol; (3) evidence of abundant gastric bile reflux at endoscopy; (4) endoscopic signs of chronic gastritis; (5) histological signs of chronic gastritis; and (6) absence of Helicobacter pylori infection. Dyspeptic symptoms were evaluated by means of a self-administered validated questionnaire. Patients included in the study were randomly assigned to one of three treatment groups for 3 months: sucralfate, rabeprazole, observation. Patients were re-evaluated at the end of the treatment.

Results: Sucralfate and rabeprazole therapies were both able to significantly reduce epigastric pain, heartburn, bloating and halitosis. Endoscopic/histological signs were lower in both treatment groups compared to the observation group.

Conclusion: Both sucralfate and rabeprazole therapies are effective treatment options in the patients with alkaline gastritis when compared with observation.
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Hi Dawn -

I do hope that you manage to get your appointment at Dartmouth soon. I did my blood work this am. one test I discovered was for crohn's disease as well as B12 and Cortisol levels. I will wait to hear what happens when the tests come back and go and talk to the Dr.

I decided last week after I dropped Prevacid that I would try going natural (ie aloe etc) and I would try and eat more. Like you I was getting really worried too. I was 124 before Christmas - 5'4" skinny legs anyway and now weigh 112. We have to eat so much more than we can manage at the moment even to put on a pound. I do have good and bad days. I am elevating my head at night on more pillows and also sleeping on my right side. That seems to help. I have been trying to eat a little as often as I can - say every couple of hours.

I either have a toast or a shake for breakfast. A banana an hour later. I also eat Kashi honey roasted granola bars. There are two in a packet, 180 calories for both bars, but they are not sweet or full of junk and they are tasty. I try and eat a sandwich for lunch if I have a shake for breakfast. I don't think that salad is that great for me either. We have been putting either chicken or different fish on the grill and I try and eat potates or couscous or pasta of some sort but a variety of veggies. Broccolli, zucchini,green beans seem to go down quite well. I make small portions for me.

Because I have made myself eat more - I am wanting to eat more - I am not symptomless but I think without the ppi's and more food I am doing a little better. I have tried a little wine. I am definitely not constipated and really need more calcium to bind me up sometimes!

I would really encourage you to eat a little and often unless the symptoms are really really awful. I think it will help you increase your appetite. I know that it is the pain that stops me eating in the evening. I am still thinking that the Prevacid etc takes too much acid out of my stomach which is why the pain is worse but better without it. Just a thought.

Thank you for all the information that you sent. I need to read it again.

I am not sure which products are sucralfate and rabparzole. Is one of them Questran?

Keep me posted. Feel better - WE WILL get to the bottom of this and feel better. Take care.

Carolyn

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Hi Carolyn,

Dartmouth has put me off for an appointment until my Gi and they confer. So no help from them on the bile gastritis for now. I got a reply on the internet from the U of MD (surprising) and I will paste it for you.

Stomach burning and nausea after removal of your gallbladder are unlikely to be due to reflux (GERD). Typical reflux symptoms are heartburn and regurgitation and one would not expect the onset after cholecystectomy. Acid reflux should be adequately treated with PPIs which are typically very effective. Bile reflux is rare. You may be describing bile gastritis. Unfortunately, there are no definitive therapies. Trials of PPI, Carafate and Questran are all reasonable. A trial of a promotility agent (Metoclopramide, Domperidone) would also be reasonable.

So nothing new from what I have been doing. Carafate is a kind of super antacid that coats the stomach and protects it from bile and acid. Questran is a bile acid sequestrant that binds bile in the intestines particularly good for those with diarrhea. That is not me, lol. Rabeprazole is the generic name for Aciphex, just a newer, faster acting PPI. I was interested in it because it also supposedly increases mucin in the stomach which in theory would help protect from bile. I am afraid to take the promotility agents (Reglan) because they have horrible side effects (tics,depression, suicidal ideations, spasms). I also found out that erythromycin is used for promotility but is not as effective and has cardiac consequences. So unless we have gastroparesis (delayed emptying of the stomach, they do an emptying test for that), I don't think they will help.

Yeah, eating is hard. I was extremely nauseous this morning and took some Emetrol. I felt better and tried to force myself to eat. I agree it is important to eat and get frequent small meals in, I just have no appetite for anything.

Good luck with your blood work. Let me know how the results come out. It sounds like you are doing marginally better, and I swear there are some days that I think the same. But then I am back to square one. I am getting to the point that I could deal with this if I knew I would feel better in a year. I can't imagine the rest of my life like this.

Take care,

Dawn
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Hi Dawn - Just thought I would say a quick hello to say I hope that you are doing a little better. I'd like to say that I was but I am not at the moment - I am waiting for blood work results. I am not taking anything but the aloe and some probiotics.

It is sunny here in Florida but we need some more rain. Our son arrived from Boise ID for two weeks which is really nice and just what I need!

Anytway - just thinking about you. Hope that you get a good appointment.

Take care,

Carolyn

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Hi Carolyn,

I am so sorry to hear that you are not feeling well again. It is exactly like that with me too, one day I feel almost normal and the next I am sick. There is no rhyme or reason to it. Perhaps something will show in your blood tests.

I finally got an appointment at Dartmouth but is not until next month. I spoke to my GI again and he wants us to start over. He feels I am taking too many different meds and not sticking with anything consistently so that symptoms can be narrowed down. Yesterday I was nauseous and he prescribed some Phenegan for me. It knocked me out so much last night that I forgot to take any medication. I felt so good when I woke up I didn't take anything today. Who knows what tomorrow will bring? I keep thinking I will pay for this.

If this makes you feel any better, my GI told me that it takes a really long time for some people's bodies to adjust to gall bladder surgery. And for those with bile relfux, it takes months for the bile duct to enlarge to accomodate the bile flow from the liver. He said I am way outside of the bell curve considering people with gall bladder surgeries. Most are chowing down on everything, but there are those rare unfortunates like us who develop complications. He truly believes this will resolve and worst case scenario is up to a year.

I am trying to be optimistic. He can come up with no new medications or strategies for me other than to take the Questran as often as I need it up to 4 scoops a day (it is a powder). I have stopped the Aciphex.

I hope you have more well days now especially with your son visiting. Please let me know how your tests come out. Hang in there, we will get through this. My thoughts are with you.

Dawn
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Hi Dawn - Thank you for your nice note. I am glad that you got to see your GI. I agree with him about taking too much of anything - one tends to look in the medicine cabinet and say "Which shall I try next!" and do it. I am glad that you got your appointment with Dartmouth.

That is interesting what he said about taking time to settle down and the duct accomodating the difference.

I have to say that I have had diarrhoea for the last three days or sto and can't say that my stools have been normal for the last couple of months. At first they were and I thought that maybe it was because there was a fair amount of swelling after the op that caused the bile duct to be narrower. Once the swelling disappeared then the stool problem has been more noticeable. I think I definitely need Qustran.

I went to the walk in clinic last night because I could not get an appointment with my Dr. I went because I have seen him before and he is a sweetheart. He seemed to think that I had gastritis and recommended that I use Pepcid AC once a day for a month to see how that works. Also to visit my Dr. again and follow up with the GI guy. He also said to check up and see if we did for sure get the results of the polyp in the GB, Anyway I took Immodium yesterday and it carried me through to this morning. He said that I must eat - no matter what. Ensure, McDonalds(!) bagels, etc (some tongue in cheek like the McD's!). I have also had a low grad headache and general achy legs etc too.

I know that I do not tolerate too many carbs well and I have been drinking Gatorade for the last couple of days so the sugar might be the problem.

I don't know if you have ever read "Eat right for your blood type". I did and pooh-poohed it to begin with but I am not sure that there is not something in it. I am an A and I can see why!

Anyway I do hope that you feel better too.

I go back on Thursday for the bloodtest results but the other Doc said he thought that nothing would show up.

We WILL GET to the bottom of it -it may just be patience!

I hope you manage to get some more food down you too and that you feel better.

Will be in touch later when I hear anything.

Have a nice weekend and take care and you are also in my thoughts.

Carolyn

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Just checking in to see how you are doing. Good luck with your blood test results. Is the Pepcid AC helping? I had a couple of really good days and like always, last night I had a relapse. It has been eight weeks now since the surgery. I don't know if I can live the rest of my life like this, but really what choice do I have?

Let me know how things are going. Hang in there.

Dawn
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So good to hear from you. I am glad that you have had a couple of good days too. I did as well but then Tues and Weds were not so good. The pain comes and goes but I have still been having diarrhoera and take Immodium about every other day - love that symptom! I get these strange feelings - I suddenly feel very weak in the arms and legs and shaky and my head feels odd. As I have a bit or a left ear problem - ringing, deafness, odd vertigo - it suddenly seems to come on - a loud truck in my ear and pressure - can't explain it - probably unrelated but it does not help.

 

I have really been trying to eat more but when it adds up I am lucky if I eat 1500 calories. Have you found any foods that make you feel particularly worse? I had a glass of red wine last night.

 

I am on about day 5 of the pepcid ac I take it at night. I have to say that since I stopped the acid reducers the heartburn is much better - some things seem to make it worse but it is the general feeling of tiredness and all of the above that make me feel just plain not very well.

I think I look awful - so thin and now I look pale though the blush and the pink lipstick help.

 

As I have a carb problem I am going to ask the doc about a gluten test. Also will ask about the erythromycin. I expect that she will suggest another endoscopy - but we will see. I will let you know.

 

What are your worse symptoms - it is funny about the good and bad days. I do think that we will get better - some people say that their Mom or sister had it and it took months to settle down. If I knew it would settle down for us I would be happy to put up with the symptoms for a little longer but as they seem to get int he way of everything - just not feeling up to doing that much that is the unknown. I am very frustrated and cross - my poor husband.

Thinking of you - we will get there in the end and I will let you know later how it went. Sorry this is so long

Feel better.

Nice not to feel alone in this.

Carolyn

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I am sorry to hear about your continuing symptoms. You have many different ones and really are suffering. Mine are centered around constant burning pain and nausea. But I truly believe it is too coincidental that they all started after gall bladder removal.

Perhaps you could ask your Doctor about the Questran. I know it is supposed to work wonders for the D, but I am taking it for the bile reflux in my stomach. It seems to help marginally. My GI switched me to Welchol because I couldn't stand drinking the liquid and thought it was contributing to my nausea. The Welchol is supposed to have fewer side effects, but all I know is that it is very expensive. It works about the same as far as I can tell.

I too am taking some Pepcid AC twice a day. My GI says I don't need an acid reducer, but everytime I stop , I get worse. Depending on the day, the burning is either in my stomach or feels more like regular heartburn. I think the Pepcid helps the regular heartburn.

I have not been brave enough to try wine and I used to love having a glass with dinner. The things that make me particularly bad are any type of spicy vegetable. Once I ate some tomato sauce (big mistake), I got sick from a salad of spicy mesclun blend, and last night I sauteed some onions, peppers and chicken in cooking spray. I have had severe burning pain all night and morning in spite of upping my Welchol. I don't even dare eat anything fatty.

I know what you mean about feeling poorly. My husband has been a saint through all of this, but it is impossible to explain to another how badly you feel especially after 8 weeks. I am grouchy and mean when I am sick and cannot think about anything but my stomach. We can't go out and enjoy ourselves and each day's activities depend on how I feel. And just when I get complacent and think things are turning around, bam, I am back to pain again.

I hope we are right that this will get better. The good days will outweigh the bad and eventually there will be only good days. If I knew this would resolve, I could live with it easier. It is too scary to think this might go on forever.

Please take care and let me know how you are doing.

Dawn
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Hi Dawn -

I have just been reading all your posts from beginning till now. I hope that you have had a good day today. I wonder when you have your appointment for your visit to Dartmouth? Is a partial gastrectomy when they actually remove part of the stomach or is it just some of the lining? I hope that all works out for you. Please keep me posted.

I did go to the Dr. today. I was dreading it thinking that she thought that I was just another "Anxious Annie". However as always she was a darling and was so kind and such a good listener. I told her that I had googled all sorts of things, found different blogs with lots of post GB op symptoms - all complaining of the same sorts of things as you and I do. I also told her about you and how nice it was to have a GB buddy!! (Well I wish I didn't have to have one but I am so glad that you answered my post because it is great to have two heads working at this and someone who knows what it is like and it is so helpful to have someone nice to be able to complain to or run things by).

She listened intently - also followed up with me about another patient she had (who had had similar run around with all the different tests and had had her GB our about 2 months before me). It turns out that she is going through the same things and also has diarrhea too. She even pulled up her chart as this patient had gone to see the GI and she was hoping that there might be a report of some help. I told her that I suspected bile reflux but also told her about my carb problems. She read the article on the erythromycin and thought it was very interesting. She said bring anything to her attention and look hither and yon. I told her that you were on Questran and she thought that would be an excellent idea because if it helped it might at least prove that it was bile reflux that was the problem. She also suggested doing a celiac spru test (for gluten). So I have more blood work to do and also getting Questran.

At the moment I am only taking one Pepcid AC Max at bedtime. I am also doing aloe a couple of times a day and also the herbal drops (when I remember).

Tonight I feel shaky again and my ear is ringing loudly and my legs ache - WHAT is happening to me? AAh!! (That can't be bile reflux!)

I so feel for you about eating and husbands and being sociable and glasses of wine and being really crabby. I am the same - I am so over this whole thing and have serious sense of humor failure abut it. - Tearful from frustration from time to time too.

I work a day and half a week in the local Christan Book Store. Lovely lovely people and they pray for me alot which is really nice! This whole thing just puts life on hold and that is awful. I really dragged myself round England this time when I was home for 2 and half weeks and I love being there - our daughter Rosie married another Brit and moved back there about 3 years ago and now has Archie - aged 1 darling little grandchild and there dog (my granddog (working cocker spaniel)who is about to have puppies any day)! Apart from my husband here we have two Jack Russells - who are lovely but wild and a son Eddie who is a marathon runner in Boise Idaho but who has come back for a visit for 2 weeks.

I do hope that you are feeling better. I will keep you posted on the Questran. I ate chicken and rice for lunch (lots of rice - bit fed up with chicken) and some fish pots and peas for supper - I did have a drink but may regret it. Oh well.

We WILL get over this. Now there are three of us in this and my Dr, I am sure, has a vested interest in getting both of her patients better and maybe that will help you too..

Take care.

Carolyn

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HI you 2 Ive been reading your posts Im interested in knowing about bile reflux myself I had my gallbladder removed in Nov 06 and I have bad acid reflux prior to that they actually found the gallstones by accident but guess it was a good thing!
I had a fundo (acid reflux surgery) in 2001 IM 29 will be 30 in a few weeks YEAH... anyway my reflux was pretty much under control Id have some bad days but as long as I took my Prevacid and ate pretty good I was ok UNTIL a few weeks ago I started having MAJOR reflux again but this was with a vengence nothing helped and I never stopped taking the prevacid so I made a Dr's appt he said its unikely that the prevacid stopped working but theres a small possibility it could have so he said lets switch to aciphex twice a day well it didnt help so he wanted to schedule an endoscopy and do a bravo study that stays in your esophagous for 48 hours as he ws thinking its bile not reflux and he wanted me to continue to take the aciphex while doing the bravo study so I did this and he called (well the nurse called) and said he wants me to take carafate as he said the biopsy showed my stomach really inflamed (BTW I have bad IBS one Dr said it was Cronhs but this MD I see now saya no) so I have to take Carafate its a liquid 4x a day and continue the Aciphex which I have been doing for about 2 weeks now I knida see a difference but Im still having reflux and pain when I swallow WHICH is driving me nuts!

Anyway I cld the Dr back to let him know this he was on vaca. and the covering MD reveied my chart and wants me to start Welchol to bind the bile? I remember the last Dr who found my gallstones wanted to start me on that med but I never took it since I was having it taken out!

So thats my drama I wanted to know what side effects youve had from Welchol???? But Im going to wait to see my Dr until I start that med to seee what he says hes really nice and caring so I trust his opinion and I dont knwo the covering DR so Im waiting any advice you have I would appreciate and I could dish out some too if you have any questions???

I can tell you I have bad diarreah after my gallbladder removal but I started taking Flora Q (a priobiotic) it orks great I have a few bad days but NOTHING compared to what I did have!
ANyway hope to hear from you both

 

Kim

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Hi Kim,

I am so sorry to hear you are suffering too. You certainly sound like you are are having bile reflux if the Prevacid and Achiphex aren't working anymore.

I can tell you about my experience with Questran and Welchol which is limited. I never experienced D with my gall bladder removal, only
what I assume is bile reflux gastritis. From all that I have read on the internet, Questran and Welchol are extremely helpful for bile salt diarrhea, and although there is logical reasoning (it binds to bile in the intestine) to use it for bile reflux, there has never been any evidence to show it works for that condition. Regardless, my GI has me on it. I may be crazy and I was actually going to call him today, but I think it makes my acid reflux worse. Most of the time my burning is in my stomach and upper abdomen (bile reflux gastritis?), but when I take the Welchol and the more I take, I start getting heartburn further up. I have been taking Pepcid to help, and it does somewhat. If you look up the side effects of Questran/Welchol it does include heartburn, stomach upset and indigestion. Unless you are having bad D, you might want to wait until your regular Dr. comes back to start something new.

I tried the Carafate earlier and it was semi-effective. I think I would like to try it again. Hope this is helpful. Stay in touch with us and I will keep my fingers crossed for us all.

Dawn
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Dear Carolyn,

Thanks for your concern. I have my appointment at Dartmouth on the 16th of July. And yes, a partial gastrectomy would mean cutting out part of my stomach. Just like weight loss surgery, which I don't need right now, lol. But until I get this problem straightened out, I am not rushing in to any more surgery.

It sounds like you have a great doctor. Maybe she will be able to help. I think the Welchol is causing me to have acid reflux and I am back to square one again. I am stopping everything once again and calling my GI today to see if I can try the Carafate.

Anyway, stay in touch and good luck. Talk to you soon.

Dawn
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Hi Dawn (and Kim if you are on this thread.

 

This whole thing reminds me of the conundrum of the fox the chicken and the grain. Which do you take across the river first in the rowing boat to stop one eating the other? Shall we try this med. or that one and does this make it better or worse or shall I take this one with that one. It is so hard to know which ones work which make it worse or which combos help. The only med that I am taking is the Pepcid AC Max - but like Kim I am also taking the probiotic. Maybe we are not being patient enough. If we have pain - there must be inflammation and often that does not die down till the tissue is healed. I am still doing a few 'natural things' like the probiotic and the Dr Vogels Dig. herbal drops. I also take Lecithin granules - which is a fat emusifier (it is found in soy and egg yolks) "Lecithin enables fats, such as cholesterol and other lipids to be dispersed in water and removed from the body". (quote Nutritional Healing). Whether this would help with bile dumping I am not sure. I eat very little fat - mostly butter on bread and toast and whatever fat there is in chicken, some olive oil in dressings too.

I am getting the Questran today and will try it and see what happens.

I certainly feel the heartburn is better without the acid reducers.

I am sure that I will probably talk to you before the 16th Dawn - but do let me know how you get on. I shall be anxious to hear how you are.

Kim - I hope that you make progress - it has been really nice to have Dawn to chat to and sympathize with.

 

Carolyn

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Thanks to you both!

Yeah Im not starting the Welchol until my I see my actual Dr first and I did read about ALL the side effects so I planned on mentioning that to him as well...

My main complaint changed daily ha ha

its either really bad burning/reflux or pain in my throat <---which is new but a side effect of reflux some how?

Im very thankful that I dont have the "runs" after havign my gallbladder removed but I know the Flora Q (priobiotic) works good not to day every day is wonderous in the dept! But a WHOLE lot better!

Its hard because im a single mom I have 2 girls 13 & 11 and they think Im dying because Im always sick they are sick of me being sick sometimes more than I am but Im hanging in there I get through everyday by God's grace Im not a religous fanatic but I have an everlasting relationship with Christ and a firm belief He will bring healing to me wether its through a Dr or some other way I know it will happen!

Its just all the waiting and issues thats so hARD!
Thanks for the support I really like this site wish I had found it sooner

Kim

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Dear Kim and Carolyn,

It is so nice to have support out there in cyberspace. It is so hard to explain to our families how we feel and unfortunately it affects them too. So much of my day is wasted dealing with my GI issues, I feel like I am 100.

I am still taking the Pepcid AC and for some reason it helps. It is an acid reducer too, but not as strong as the proton pump inhibitors. Unfortunately, it is not effective long term because the body builds up a tolerance to it, usually within 2 weeks. So this is just a short term fix until I either have a miraculous recovery or I try yet again another combo of meds. I drink a kefir smoothie everyday which is supposed to have mega doses of probiotics in it, so I guess I am taking them too.

Good luck to everyone and please stay in touch. It is great having someone to talk to about this other than burdening my family.

Dawn
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Dear Kim and Carolyn,

It is so nice to have support out there in cyberspace. It is so hard to explain to our families how we feel and unfortunately it affects them too. So much of my day is wasted dealing with my GI issues, I feel like I am 100.

I am still taking the Pepcid AC and for some reason it helps. It is an acid reducer too, but not as strong as the proton pump inhibitors. Unfortunately, it is not effective long term because the body builds up a tolerance to it, usually within 2 weeks. So this is just a short term fix until I either have a miraculous recovery or I try yet again another combo of meds. I drink a kefir smoothie everyday which is supposed to have mega doses of probiotics in it, so I guess I am taking them too.

Good luck to everyone and please stay in touch. It is great having someone to talk to about this other than burdening my family.

Dawn
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Hi Dawn and Kim -

I am still having a problem with the AR Website. Every time one of you replies to me I end up with 20 notifications that there is a reply for me. I write back to you and the send another 10 or so replies saying there is a comment from someone. These things are breeding!! I don't want to miss any posts but at the last count I had about 40 notifications from AR Website - which in fact contained 2 replies from you two and and one from me!!! I don't want to turn it off because then I won't know when you write. On the other hand I have tried going onto the website and the only post that I can find is the one that you Dawn replied to in the first place. My question is - do you reply to me because you get notified and if so do you get 10 notifications every time? or do you go to the website and find a place where you can access our emails - I have searched and cannot seem to find them anywhere.

Your frustrated Post-GB friend and website user!!! Carolyn

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Hi Carolyn,

I am having the same problem with the website. I got 17 email notifications from your last response. And the same thing happens when I reply. I have had up to 48 messages at once. I just go in and delete them except for the last one and reply to it. I don't know how to fix the multiple replies. I guess we could set up an email address just for us GB buddies. Have any other ideas?

Dawn

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HI guys

I dont have that issue with the notifications yet anyway!
AUGHHH my throat is hurting me again its soooo strange I never had this before and ALL OF A SUDDEN Im having throat issues...... along with the reflux etc...

You really start loosing it when you would prefer one ailment over another!!!!!

I hate eating now which is terrible!!!!

Oh well Im gonna go try and relax and watch a movie without popcorn :(

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Dear Dawn and Kim -

I am at gcernestjones@bellsouth.net and would be happy to receive posts there if either of you want to do that. You might not want to pass out your own email but if you want to set up something separate that would work. If anyone else joins the AR Connexion and replies to one of us then we will be notified anyway (48 times!!!). I am afraid that I might miss a post somewhere and still can't find a way back to where we all post.

Kim - the pain in the throat must be the acid going up your oesaphagus. Poor you that is horrible. I thought that I was having a heart attack when if first happened to me and it also gave me strange tingling in the skin around the outside of the throat and jaw area which really made me feel that I was having a heart attack. Of course I ended up in ER. Reading some of the pre gallbladder posts - many of these symptoms mimic heart attack symptoms and so many GB sufferers end up in ER. I wonder what would calm it down best.

My chiropractor said that taking 1/2 tsp of baking soda should help regular acid reflux because it is alkaline and neutralizes the acid. I am not sure whether it works with bile acid reflux and I don't think it helped me much. Milk can also be helpful. We alway buy fat free milk but just lately, because I am now so skinny (another 3 pounds down since I last saw the Dr.) I have taken to drinking whole fat milk (never thought I would do that again!!!). It actually feels good too. I buy organic and I think it tastes better.

Anyway we went out to eat tonight and I won't tell you what I ate because you won't be sympathetic when I moan and groan tomorrow - why one earth can't we eat what we like - the surgeon said "You can eat anything you like now" Ha! I wish.

Have a great healthy weekend.

 

Carolyn

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Hi Kim,

I just know I am going to have 48 notifications in my inbox, lol.

You are so young to be having such problems. I am sorry to hear about your throat. I hope your Dr is back from vacation soon. Is there a possibility that you need to have your Nissen redone? I only know about the surgery because I have been a fanatic researching everything and it is sometimes recommended for bile reflux too. I think I read that some people have to have it redone after a few years. Was it helpful and did you have any complications?

It really stinks not being able to eat, doesn't it? The surgeon told me the same thing, I would be able to eat anything. I can't even eat the things I used to. And now that it is done, they shake their heads and say how unusual, but not unheard of. Oh well, just try this medication and hope you improve over time. Before surgery, "its a piece of cake, a couple of days and you will better than new", after surgery " it takes months and months for the body to heal after a surgery, it is a major trauma, it is early yet, give it time". As you can imagine I am not anxious to have anything else ripped out or cut open just yet.

Hang in there and please let us know how you are doing. I am going to set up a separate email account so I can deal with the multiple notifications. I will email Carolyn too. Take care of yourself and your girls.

Dawn
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Hey there

Yeah that Nissen was no walk in the park I personally think I have a pretty good tolerance to pain but when I woke up from that surgery I wanted to literally die I felt like I was dying I was in EXTREME PAIN but I think it was more from the gas than the actually procedure becuz they pump you full of all kinds of gas in order to do it the laproscopy way...

The surgeon preached that I would be able to eat anything I couldnt before and also said to go ahead and stop the prevacid which I did but you know your on a restricted diet after the sugery

Well I wasnt able to tolerate solid foods as the wrap was tight and one thing lead to another I had to be started on Ensure because the most I could eat was mash potatoes and that was pushing it!

Well I was extremely frustrated and being stubborn stopped drinking the ensure and landed up back in the hospital as I passed out and had next to NO postassium in me my heart was racing and everything went black it wasnt a good time in my life as I lost 30 pounds and Im normally like 140 but Im 5'9 so I looked like death!

well after that my Gastro at the time lossened my wrap and I was back on prevacid to make a REALLY long story shorter it worsened me in my opinion all that went on for 9 months!

But thats just my experience I dont want you to think that happends to everyone you know!

I have had issues with my stomach my entire life my mom almost died at 30 with ulcerative colitis it runs in my family One of my Dr's thinks I have Crohns my new Dr says NO! but I have been seeing Gastro's since I was 13 so Im use to it

I work in the medical field in the background though my sister and mom are nurses.

It just sucks your entires life up being sick, but at the same time it could be horriby worse for all of us we could have no insurance or access to a Dr or Cancer or something else we all have a cross to carry I beleive and I know I will prevail with the help of God of course!

My girls actually help me alot they are great I had them really young at 16 & 18 and I have always been single so we are very close and they know pretty much all that goes on with me but I dont tell them everything though....

I hope your weekend is going well you both wil be in my prayers Im interested in hearing how we all turn out! LOL

WEll Im gonna run Im watching another movie! LOL
they are my escape!

TTYL

KIm

OH I did have a few notfications this time but it was only about 5

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Hi Kim and Dawn - So sorry that you had such a bad time Dawn - so you have had weight loss too.

What concerns me is that now I have dia... I don't know how much that I am absorbing. On a plus note I am eating more. I have good times and bad times.

The only med that I am taking is Aciphex + Max at night (1pill) but I started the Questran yesterday.

My heartburn is much better than it was - though some foods will give it to me.

It improved when I stopped taking the acid reducers which included, Nexium the Protonix and the Prilosec. The pain comes and goes - I worry about it less now because I know what it is (I worried myself to death before I knew what it was). Naturally I would like to get rid of it.

I am doing Aloe before meals, and also Dr Vogels digestive drops, and a probiotic once a day. Otherwise a multivit, and now B12 as she said mine was low. I have started drinking Alacer Electro-mix which I add a little flavor too. I was worried with the dia.. that I too would get dehydrated. I make up a packet or two a day and drink that instead of regular water.

I am definitely eating more and tolerating more - but because of the dia... and the fact that at 5'4" I have gone from 124 to 110 and still seem to be losing - I really want to try and put some weight on. Ha Ha! The other thing that I take too is Lecithin after meals. Lecithin emusifies fat and I don't know whether that would prevent the bile from rushing out to do the same thing.

Kim I read the blood type diet and am a Blood Type A. I still think that there is something in that. Some people thing it is rubbish. A's tend to suffer from digestive diseases crohns etc, cancer, heart problems. (I don't know whether my Mum was an A but she had colon cancer - though it did not kill her. The recommended diet is more vegetarian. no dairy (except goat's milk and cheese), no red meat, chicken is neutral, fish is fine (no shellfish) some grains though not wheat etc.

The reason that I am telling you all this is that A blood type people do not produce much stomach acid. I definitely felt better (heartburnwise) when I stopped taking the acid reducers. As the acid problem seems to be bile acid. then it makes sense that if you don't have much acid in the first place and the AR's stop it altogether - there is going to be a real deficiency in stomach acid and might cause more pain. It makes sense to me - as I do believe that the blood type diet makes sense but some don't.

I know that I also get into trouble with aches and pains when I overdo the wheat and carbs - but as fats are now a problem what else is there to eat AAH!!!

Just a question for you Dawn - how often and how much Questran a day did you take. I only took one scoop yesterday as she said "Let's start on one scoop" . Then say it said on package 1 x 2 a day. (Should have read the package more carefully. Did it make you constipated?

We will get to the bottom of all this. I will keep you both in my prayers.

Carolyn

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Hi Carolyn and Kim,

Kim - It is unbelievable how much you have been through already. I didn't even know there was a surgery for GERD until I went through all of this stuff myself. It certainly doesn't sound like the easy fix Dr.'s make it out to be. As with all surgeries (dripping sarcasm). But you are so right, it could be much worse and I have to keep it in perspective. I guess I am frustrated because I feel like I inflicted this upon myself. I had the gall bladder removed "just in case". Just in case it would get worse, just in case it would be an emergency, do it before it becomes a problem. Now it is a problem and no one has any answers other than it happens, oh well, it sucks to be you. I apologize for being so negative but everyday I wake up hoping this will be the day my body "adjusts" and I am back to normal, whatever that is anymore. At this point normal would just be no more pain even if I couldn't eat the things I love anymore. You have such a good outlook and are so positive, I appreciate your support.

I also never dreamed I would ever worry about losing too much weight. I used to be very overweight and about 8 years ago I went on a strict low-fat diet (that was the conventional wisdom back then) and lost 80 pounds. I think that is how I developed gall stones. I am 5'9" and although I weigh about 160, I am very large framed and that puts me between a size 8 and 10. I am perfectly happy with that, Now I have no appetite and can barely eat and what I do eat, I am sure I am not getting adequate nutrition. I eat like an invalid, bland, low-fat foods because anything acid, fatty or spicy in any way sets off the pain. My blood type is AB and I have seen the blood type diet, but at this point I am eating whatever I can tolerate.

Carolyn - I think you are right to be careful with watching your nutrition. One of the side effects of Questran is that it eventually blocks the absorption of Vitamins A, D, K, and B-12, all of the fat soluable ones. That along with the D would probably deplete you. I think you have to be on it for a long time before that happens though. I started out taking one scoop of the Questran at night before bed, but then upped it to 4 times a day. I think it made my stomach worse, but you are using it for D, so that may not be an issue for. My Dr. said since I was using it for excess bile, I would not get constipated. He was right, I actually was very regular on it. I have switched over to Carafate and I can tell the difference already, because I am now constipated. But this medicine seems to help more with the burning. I will just add laxatives to my mix. I am glad to hear you are feeling better, Carolyn. How did you make out the other night going out to dinner? Did you pay the next day?

Kim - What do you think of the Carafate? Is it helpful to you? Do you have any side effects?

Sorry to be so long and rambling, just trying to consolidate my post to both of you so I don't end up with 100 emails. Good luck to you both and thank you for being there.

Dawn
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Dear Kim and Dawn - Firstly I must have deleted a post where you told us about the Nissen originally Kim. I am so sorry that you have been through all that and I am sure that it must be really hard being a single Mom and having to take care of everything as well as feeling ghastly.

Thank you for the heads up on the Questran Dawn. I take my meds at night so will have to find a better time. I think I might try and take it before meals - though I don't want it to interfere with the other things that I take.

On the dinner front - well I had mussels and some linguine. (no tomatoes or spicy) and some wine. I did not feel so great the next day but not worse than usual. I have really been trying to up my food intake eating eggs and toast for lunch and trying to eat as much as I can - though avoiding fat, spicy, onions, toms peppers and citrus. I drank Guiness at lunchtime - because it is calorific. I am not 110# and that is way too light and don't like looking at bones and pale face though Graham says I look quite well! (the blush and lipstick help). So I am trying to drink and eat and also full fat milk. Will keep you posted. Will see what the questran does. Hope that the carafate works for you Dawn.

I have another quirky "natural remedy" for heartburn. Don't know whether it works but will post it next time.

Take care Dawn and Kim

Carolyn

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Hi Carolyn & Dawn!

yeah that Nissen wasnt fun but its done and over with now! Its funny I hear alot of negatives things on that surgery now from Gastro's whereas back in 2001 when I had it I guess it was all the rage LOL

Stupid me feel for it.....:)

I hope you two start feeling better I know all too well about the restrictive diet I NEVER eat anything acidic or spicy! Its funny my kids know exactly what i can and cant have its sad too though because I think I kinda passed that diet off on them! How rude of me! I will make seperate things for them though like PIZZA we make them ourselves mine is veggie and cheese theres is peporoni and SAUCY! you know we cant eat that!

And Im not always positive I have really really bad days and break down and cry especially lately but I have to have faith and trust in god and know He will heal me... I cant give up! nothing to too BIG or small for Him...

Hang in there!

My dad is doing the blood diet! He is type O and he will not shut up about it!

He is doing it to the T!

He calls me and tells me every little detail! He wants me to try it too for all my issues but I need to see and also find out what my blood type is! Its terrible I dont even know it! He is coming to visit me soon and bring all the info he has on it DVD's and Books! I live very far from my family about 1000 miles I moved last year from S FL to Tennessee but my older sister is close by but she and her hubby are moving next year!

Ive been on that Carafate and Aciphex for a few weeks now and I really cant tell if Im better or not I am still ahving break thru reflux and that pain in my throat when I swallow not every time but sometimes then I will (this is gross sorry) spit up FOAM! and acid I guess then the pain subsides somewhat in my throat and then the good old burn comes along to keep me company through out the day!

AUGHHHHHH serenity now LOL

It will get better I know it!!!!!

thanks for listening or reading my rants!

Your in my prayers

KIM :P

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Hi Kim and Dawn -

Having a not so good day today. Woke up and was quite bouncy - went off to work with just the whiff of dizziness (and dia.... in fact had to turn round and come home for 10 mins). Got to work and the dizziness stayed all morning and I felt nauseous. This I believe is part of the Vertigo stuff (can you believe these things act up together?). So like you Kim I feel like crying today and I am also very very bad tempered and grumpy. We have a young man coming for dinner tonight. He is a friend's daughter from near Edinburgh and as Eddie our son is here too that will be nice but.... How am I going to cook. Thank goodness for the grill and weather - Graham is great like that and will take care of that end of it.

Having felt better over the weekend today I have pain. Why do we come and go like this two good days followed by two horrible days. It is so hard to plan anything. Anyway thinking about you both and SO glad that you are both there. You are both in my prayers too. I am glad that the Flora probiotics are working well for you Kim I take two of the probiotics that I take, a day. How much of the Flora do you take and who makes it? I must say I had to resort to Immodium today. I took two doses of

Questran today, but Dawn you said that you didn't find it constipating! I shall hav to see how I do on that for about a week and see if it makes any difference. I did think that the pain in my stomach was getting better but then not today.......

Oh well.

Tomorrow is another day......

Feel better both of you and hope you are having a good day. The dizziness has subsided thank goodness.

Carolyn

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Hi Kim and Carolyn,

We are all having quite a time of it, aren't we? The Carafate seems to be helping my burning a bit, but trying to find an eating schedule around it (must be taken one hour before any food, no other meds for two hours after, take 4 times a day) is challenging. And I think it takes away my appetite. It sits like a block of cement in my stomach and I am just not hungry.

I too have a new symptom. I have a pain behind my sternum that feels like gas. Could it be acid reflux now? I don't even want to think of any other possibilities right now.

Kim, I am sorry to hear about your throat and burning. When will your Dr. be back from vacation? It sounds really bad and I am worried for you. And Carolyn, dizziness, nausea, and D. What a horrible combo. Hopefully the Questran will help with the D. It really wasn't constipating for me, but I guess everyone is different. I am having a much worse time with the Carafate. Maybe you need to up the doses. But the nausea could be the Questran, because I experienced it too. I read that those symptoms go away over time, but who wants to feel sick until that happens? And if you are only getting 1,500 calories in and still losing weight, perhaps some of the dizziness is related to that? I once read that the starvation cut-off calculated by the WHO is 1,200 calories. I think that is all I get in a day and some days that is hard to do.

It certainly is hard to have a life with this. My husband and I bought a house in Vermont last year so we could eventually retire here. We decided to do the long distance thing since he still has a business in PA. My 24-year-old daughter is living with me right now. She returned to nursing school after getting her Biology degree and breaking off an engagement. My husband was just here for 10 days and about half of them I spent in bed. We had so many plans and most days I just couldn't get past the pain. And of course your friends and family want to eat, but when you feel horrible who wants to cook let alone eat?

I am so glad we are here for each other. There isn't much else we can do but rant and rave and hope for the best. Take care both of you and stay in touch.

Dawn
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HI there Dawn & Carolyn,

AUGHHH I told you Dawn that Im taking the carafate too! and yes its pain in the butt to schedule taking htat and EATING when you never feel like eating!

I was hungry when I was in church on Sunday night and I was like I HAVE to take that carafate before I eat! So I carry a smaller bottle around with me and a little dosing cup and took it in church LOL

I was like look at this!!!!! I just had to laugh because Im so pathetic with these meds I honestly dont see what difference that medicine is doing? But he said I need it due to the results of my biopsy!

I did NOT have a good night last night I couldnt even eat my 6 inch sub from Subway nothing on it except ham turkey and provolone thats it NO toppings or mayo nothing but I like it like that! I had a few bites and felt sick! Im starving but I cant eat and my throat my hurting and ever since I had that Nissen I have gas in my chest but cannot burp that is the worst feeling in the WORLD! well one of the worst!

and guess what Carolyn today Ive had Dia.... like 4 times already and its only 11am!!!! but Im like well at least im getting it out LOL i know thats gross but Im going to an even tonight at church for the 4th of July they do it early its awesome huge huge Fireworks and of course FOOD I cant eat! LOL Ive never been since I moved here in July last year so Im looking forward to celebrating USA!!! but without the food I decided since I cant eat I will have smoothies and soup until I see my Dr which is on 7/25 Im just going to wait becuz I dont feel like dealing with changing the appt etc!

Im so over this Im giving it to God and waiting to see the Dr I will really watch what I eat till then

I hope you 2 start feeling better I so understand all you both are going through when you cant do certain things or go places, Its really hard because I have to work Im a single mom and I have to cook for them and they have activities they have to get too but they are 13 & 11 turnign 14 & 12 in the next few months and God has gotten me this far! I know He will see me through the rest.

 

Take care

Oh ps Im getting the millions of noticfications now !LOL

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Hi Dawn and Kim -

Well we are in a sad state. I know what you mean about trying to burp Kim - I just had Eddie (my son) bang me on the back like you would burp a baby!!! (Never thought it would be the way round and he burping me!!) Still doesn't seem to help much even when some burps pop up. I am sorry to hear that you have had Dia too. I hoped the Questran would help - but it seems to make me nauseous. I shall have to perservere though and see. I do take Immodium on as needed basis - though it is yet another pill to pop. If there was some consistency in this whole thing it would be so much easier - but it is good days and bad days and, some symptoms some days. Do either of you keep a food diary or symptom diary? I lasted about a day doing it. I agree with you Dawn it is hard to eat much. I had lunch out with Eddie and had a panini which had chix, avocado and a little swiss cheese and feel horrible now - going out is never easy as there is never anything that appeals or you know will keep you up all day. Got to cook dinner tonight - I know just how you feel. It must be nice having your daughter there with you for a while but I am sorry to hear about her broken engagement. I hope that she is ok with it. Sometimes these things are not meant to be though hard to see at the time. It must be lovely living in Vt. though not when you are feeling bad. We moved to Palm City (N of W Palm Bch) from Coral Springs in Fl. 3 years ago. I like it so much more up here and love the house but don't like seeing so much of the inside of it!!!

Do you ever feel just simply strange. I have been to ER several times with cardiac type symptoms which seemed to be nothing. Tonight I feel lightheaded and with pressure around my head. It makes me feel anxious which makes the whole thing worse. I had a couple of palpitations earlier so I don't know if I am just in panic mode. Maybe I am holding my breath and need to go and take some exercise. I tend to suffer from anxiety somewhat so these symptoms are really great for anxiety too!!!!

I hope that you find the energy Kim with the girls. That has to be so hard when you are not feeling well especially working too.

I shall have to go and delete the 60 or so reminders I have in my email. LOL

Talk soon and do hope that you have a happy safe and healthy 4th and may it continue onwards like that.

Carolyn

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Hi Carolyn and Kim,

Yes, we are in a sad state. I was really hoping that by now I would be back to normal. Carolyn, I felt really nauseous from the Questran too and have been better since stopping it. The Carafate doesn't seem to do that. I had the dizzy, wierd feeling for the first week or two after surgery but that went away especially as I began to at least eat a bit more. If you are prone to anxiety, that also produces excess bile (as if we didn't have enough since the surgery). I haven't kept a food/symptom chart and kind of wish I had. It has been so long , symptoms all over the place, changing, coming and going, it just seems like forever.It is going to be difficult to come up with a concise account when I have to explain it all to the GI at Dartmouth on the 16th. Carolyn, thanks for asking about my daugher. She just finished her first year of nursing school and has one more to go. It is great having her here but I barely see her since nursing school is so intense. She is fine about the engagement. She broke it off one month before the wedding and I don't think she has ever looked back. She is concentrating on her career right now.

Kim, I hope you are hanging in there. I take the pill form of Carafate. I don't think I could deal with the liquid. I try to take only 2 or 3 a day so that if I sometimes get the urge to eat during the day I can have a snack. It doesn't sound like you are doing much better and I am anxious to hear how you make out after your appt. on the 25th.

I hope both of you have a wonderful 4th or at least a good day. We will have to concentrate on the fireworks instead of food. Please stay in touch and keep me updated.

Dawn
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Hi Guys!

Well my Dr's office called me this Am from the message I had left when they were on vacation..... he wants me to do a barrium swallow since I have the painful throat issues....and to start on Reglan not the Welchol as the other Dr suggested! Man o Man am I over taking meds!

I am glad to do the test though I want to know whats up in my throat already!

I think I had one of these tests but it was back when i was 13 so its been awhile!

Well I will find out when thats scheduled probably tomm.

I had a great time at the Celebrate America event at my church the FIREWORKS were amazing! they did have Chik fil-A cater and Backyard Burgers but of course I didnt eat any of that I had a smoothie! and ice cream it goes down and doesnt bother me!

THis is how I felt right after I had that Nissen AUGHHH!!@@

oh well I know I will find out whats going on and it will get better God willing!

My sister and mom are nurses they work insain schedules but they like it!

Im in the medical field but in the back BILLING patients the company I work for does billing for the Dr I see which is good I dont do his billing though I do OBGYN

Anyway I hope you both start feeling better Im glad you have your hubby's and family around I know that makes it better If I didnt have my friends from church here I wouldnt be HERE! Id move back to FL

Take care

HAPPY 4th!!!! YEAH AMERICA 1776!!!!!!

Kim

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Hi Dawn and Kim -

We were away up in Orlando dropping our son up there on his way back to Boise and then back to a barbeque last night. Sad saying goodbye to Eddie.

Well eating at the barbie was a great mistake there wasn't much there that I could tell wouldn't kill me. Mind you the food I ate was not sensible. Too much fat and sugar too I suspect. I worked all day and had the dreaded D...

Took immodium but still having problems and pain too. When will this ever stop? I know that I eed to write down everything that I put in my mouth and the time and see what reaction and when. I dropped the Quetran - couldn't hack feeling nauseous, pain and D... so I still just take the Pepcid at night. Getting very disheartened, depressed from time to time but so glad to have you two to feel not alone but wish that you two were getting better too. Sometimes I think that they must have missed something and that I must have some major tumor or something and it is just because of you two that I don't panic. We can't all be having the same things by "coincidence" and having read other blogs we are not alone. One of my great friends Liz had her GB out 2 years ago. She is huge - must weight 250+ - had the pains on Monday, the operation on Friday and never looked back. I wonder whether it is because she is so large that the excessive fat presses on the bile duct and keeps everything under tighter control? Why do some people sail through and lots don't. There had to be a reason. I am only waiting for the gluten test but suspect that will be negative. Not sure where to go next. If I go to the GI guy he will needless to say want to put yet another tube down my throat - it would be third in a year. There is a nutritional doctor who is in town - I am tempted to try him soon as he was quite helpful with a friend's mothe