Me again

Hello again everyone. Yes, I am back for yet another big whinge.

I am worse than ever. I am no longer a relatively well person who has a condition that flares up. I am SICK. Very ill on a daily basis. I feel my life is destroyed, completely. My poor children have had the last 5 years without a mum, basically, just this ill person who drags her self around and barely manages to cook and wash their clothes.

For those who don't know, this is my history, very much trimmed down:

My issues started 5 years ago when I started to notice voice fatigue when reading bedtime stories to my children. My singing voice was also deteriorating.

4 years ago I noticed a lump sensation in the throat and had laryngoscope which showed nothing. The doctor tried me on Lansoprazole which seemed to help the voice problem and the lump went away within 2 weeks. The doctor took me off the drugs and I went on as usual.

Then 3 years ago after a great deal of stress the lump returned. After another scope I was put back on Lansoprazole. This time, it didn't work. The problem worsened and got more prolonged, eventually lasting all day. The doctors tried more aggressive treatment, doubling the Lansoprazole and adding Gaviscon Advance. The Gaviscon worked wonders for 2 weeks, then the symptoms returned.

Things have declined and continue to decline since then. To this date I have had 3 nasopharyngoscopes, 3 gastroscopes, a barium X-Ray, 2 manometry tests, 2 24 hours acid probes, one single, one dual. I have also had multiple blood tests. All the above have shown nothing except a slight hiatus hernia and decrease in pressure in the lower oesophageal valve.

My symptoms are now as follows:

Extreme sore throat
pain in larynx
sore burning ears
bile feeling in throat
watery feeling in throat which causes coughing and wheezing causing me to taste blood
dull ache in stomach, worse after eating (upper left under rib cage)
explosive belching constantly even when stomach is empty
chronic constipation that doesn't respond to laxatives
voice useless, I can no longer sing at all
recurring blood blisters in the mouth
dizziness and weakness
heart palpitations on exertion. I have had a heart trace which showed no problems.

I battle with anaemia, caused by the antacid drugs. The symptoms are constant, 24/7, starting in the morning and becoming worse as the day goes on.

I am not getting sufficient relief from the drugs, apart from the fact that if I don't take the Rabeprazole I cannot speak at all.

I have tried a prolonged strict no acid diet, which hasn't had any effect. I now only eat the following: One shredded wheat for breakfast with half fat milk and sugar, tuna and pasta with sweetcorn and cucumber (dry with no dressings), and stir fried courgette, mushroom, carrot and sweetcorn in olive oil with plain noodles. I don't drink alcohol at all, never drink tea or coffee, I avoid chocolate and fatty foods and don't smoke. I cycle 6 miles a day, sometimes more if I am feeling well.

Needless to say I have seen many specialists, including ENT and GI consultants. Some feel that reflux is the cause, but others disagree because the tests are inconclusive, so I am not being offered further treatment. My most recent consultation was with a GI surgeon who has put me on metachlopromide 3 times a day, which I am yet to start taking.

The surgeon said, 'I will send you for a barium meal, which will show if you have reflux. If that comes back positive, I will do an operation, with the conditions that you know it might not help, and that I can easily undo it if it doesn't. If it comes back negative, then it AIN'T ACID REFLUX!' (verbatim) I am so ill, and he told me that if it is negative, they can do no more for me. I am devastated, after all this fighting to see a surgeon, that is all I get.

I am very interested to hear anyone's take on this, my life is effectively ruined, I have no answers and things are continuing to decline.

 

seems like your symptomps could be IBS related.

I would try switch the diet to more protein and fat. (chicken, egg whites and olive oil) and limit carbs to only veggies, limit sugary foods and veggies.  a more paleo diet.

also be mindful of PH, you want to be eating low acid.

if the PH study came up negative, it could be neurogenic pain, so ask the doc for some elavil or klonpin.

 

If the amytrptline works then part of the problem is neurogenic. You need to handle all 3 of issues at the same time ibs neurologenic and reflux.

You prob making the ibs side of the issue worse because your eating trigger foods for it. Thus your slowly getting worse.

I would start ampytrpltine again go strict diet eating only chicken and olive oil eggs. You need to figure out what diet works with your ibs.
Also take ppi 2x a day for the lpr side.

Drinking milk is prob bad for ibs because of the lactose. So just stick to water. Ibs is a whole other animal you should check the ibs forum to what veggie and meats are ok to eat.

bumping for any new insight

You might try visiting a naturopath in your area. They are medically trained at 4-year schools who treat patients through some alternative methods. Couldn't hurt!