Chronic gastrointestinal pain

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I write this as my partner is in hospital yet again!!

I met her 8 years ago when she was 32 years old. She had some gastrointestinal issues as well as IBS. Her condition and pain is awful to witness. She has been on lansoperazol, ompeprazole, buscopan, trammodol , paracetamol, dihydrocodine, bucostem, cyclizene, suppositories, etc etc. she is slim but eats almost twice what I eat, and cannot gain weight.. She smokes occasionally but only drinks alcohol with a meal.

She has had scans, endoscopes, (upper and lower) X-rays, bariums etc etc.

nearly 2 years ago she had a nissen fundiplication operation, which twists the stomach slightly and stitches it to the esophegas to stop acid coming up. Initially too tight, (she couldn't eat), they loosened it which worked for a while.. She has gone 9 months without an episode and was 5 months free until she was asked to have another endoscopy last Tuesday.. She took some promote as instructed to clean out her system, which made her violently ill both ends. All they do in A&E is give her morphine, ( nothing else works) and then send her home. 4 times I have took her to A&E in 48 hours. She is staying in, for yes, you guessed it, more tests. Absolutely unbelievable!!!! One doctor half suggested that she may be seeking morphine and that's why it repeats. I nearly fell off my chair. What an absolute idiot!!! Some, not all of these doctors do not want to listen or understand, and if you mention the Internet and research that you have done yourself, it's like an insult to some of them. You can almost see the shutters go up as soon as you mention it?

One clue which I have told them is that the pain, starts from the belly button and comes up the esophegas and it is like a raging fire. She is like this for hours at a time and she just sits in a scolding shower crying. The shower eases the pain somehow, don't ask me how? The other vital clue is that she knows when the acid is taking over. She eats constantly and can't leave her stomach empty for long.. She has 2 breakfasts, lunch and a snack later, dinner and supper and she grazes between each meal. The next clue, 95% of the time she is ill first thing in the morning, and at no other time. This explains why she constantly eats. Obviously you can't eat when you're asleep which is why she wakes nauseas and on fire. Whilst in hospital on occasion she meets someone who suffers similarly and some set there alarm for the middle of the night and eat arrowroot biscuits so they don't wake in pain. Can anyone offer any help or advice at all please?

 

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  • Posted

    so very sorry....have a good feel you can help...this is very complex indeed...

    I will go to your assesment re "the start"...the "cleaning out" pre endoscopy,

    and the long term use of various PPI's...the crap they use to "clean out" is very caustic...can cause Gastritis...in an already sensitive digestive system....the process also killed all of what she had remaining of her good flora, both in her small and large intestine....I'm not sure if her system overproduces acid naturally or it actually is impaired and produces very little...thus the PPI would be overkill. I can think of only

    water and lots of it initially, preferably over 7.1 PH (tap source)...not in excess of 8.8PH and at room temp...never hot or cold...24 hours...if she appears to be stabilizing..then you'll need to gradually provide easy digestable (puree) food...

    I think you know what foods are best after 8 years. But if not....let me know what you think.

    No vitamins...supplements..etc until she stabilizes..keeping hydrated big time will hopefully keep her ghrelin at bay ..know you mentioned she needs to eat constantly...

    her "gastric juices are unbalanced"...our systems when "normal" have a specific gastric juice balance of Bile, Pepsin, HCL, etc. decrease a normal HCL production via PPI..... you lower the volume..you also increase the "consentration" of the others.

    Hope you can get others to pitch in and help...Claudio

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    • Posted

      I suffer some of the same symptoms. One thing that works for me is flipping upside down. You said that the pain starts in the belly button then seems to go upwards. Well she should rest herself in a comfortable position upside down and allow what is going upwards to go down. For me it would help to release the gas and push the stomach acid downward later Inducing a bowel movement. Which in turn would ease my pain.  It sounds crazy but it works for me. My buddy had terrible heartburn and reflux as well and this also worked for him until he got his gallbladder removed. Now he is a ok. Hope she finds some relief. 
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    • Posted

      Thanks Bigdipper.

      i forgot to mention that she has had her gall bladder removed in her early 20's. She has actually started using Andrews powder to relieve the acid. I know it's a bit old school but it seems to work better than any other medication. She has IBS as well which complicates matters as meds for one are bad for the other and vice versa. Thank you for you reply.

       

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    • Posted

      Thank you very much indeed donclaudio.. She gets very thirsty after an episode and craves cold water. I note you suggest normal tap water, so I'll suggest that straight away. I have been buying bottled water and keeping it in the fridge.

      She overproduces acid and that's what the pump inhibitors are for. Personally, I'm unconvinced if these are helping. I did read an article once which suggested long term use trains the body to make less acid, which means there isn't enough to break down the remaining food. She has had bowel movements of completely undigested food in the past?

      I'll let her know to drink as much water as possible. The promove solution she had to clean out her bowels prior to the endoscopy is the cause of this, I'm sure but the doctors having none of it. No surprises there then. I have spoken to a few people who have had this solution or something similar before an endoscopy and I've heard some right horror stories about how sick people have become, to the extent that they can't eat good they used to and can't even smell orange juice without being sick.

      thank you very much again for your advice.

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    • Posted

      Not to beat an already dead horse...but the Laxitive is TOXIC..that's why they use it...they don't want anything that "MIGHT" make it more difficult to visualize whatever they are looking for.Sad...I've witnesed the consequences...its horrific in the elderly but THEY DO IT ANYWAY.

      Water will dilute the mix in the stomach...most studies suggest weening PPI's due mostly to a rebound...once stopped..the enzyme that is now unbridled from the PPI...goes nuts and over secrets big time.

      I'll go back to my study notes see if I can find "whats what"...

      With the gall bladder removed...unless she gets extra help from the Liver..not enough bile to process food..so its gonna pass "undigested".

      My sense (may not be worth much)...the toxic laxitive caused her stomach to spasm or go into a "cramping" status...and they can hurt far more than a leg cramp...result...stomach lining inflammation....put most anything in and "it hurts". If the pain you suggest begins in the lower part of the abdomen and then travels up...that's a tad confusing..why? the navel is near the transverse colon...but and this is a big But not butt...the sense may be from her sigmoid that radiates upward? You mentioned IBS...almost a guarantee the sigmoid was dramatically impacted with the blasted laxitive...So you've a huge challenge.

      I suggested taking slippery elm pre meals..increase it to 450mg for the next few days...every meal. before I can suggest other stuff...need to know about her Blood work....what was out of range?..if any...and did any of the endoscopies discover anything?...my best to you and yor gal...Claudio.

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    • Posted

      post ppi rebound effect.

      here is one study...cannot do the link...the gestapo types censor links...guess too many scammers...google should bring it up.

      claudio

      Management of laryngopharyngeal reflux with proton pump inhibitors

      Christina Reimer and Peter Bytzer

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    • Posted

      sorry....overload...not the correct abstract...

      Christina Reimer, MD, Copenhagen University, PPI, pub med

       Proton-Pump Inhibitor Therapy Induces Acid-Related Symptoms in Healthy Volunteers After Withdrawal of Therapy

      several others re hypersecretion post PPI's

      Claudio

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  • Posted

    i also have a severe ibs and acid reflux. probiotic yogurt has made a difference for me
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    • Posted

      Hello tmak, thanks, she already drinks actimels. I think they may help her once she's stable to keep her stomach balanced but I'm not so sure when her pain is so bad and stomach so unbalanced.
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  • Posted

    HI,

    HAVE RECENTLY HAD SO MANY E-MAILS REGARDING WHAT I POSTED.

    FIRSTLY I WOULD SUGGEST THAT SHE ONLY TAKES THE OMEPRAZOLE[LOSEC] FOR THIS CONDITION AS OTHER DRUGS CAN ACTUALLY MAKE IT WORSE.I ALSO AGREE WITH DRINKING BOTTLED WATER AS IT HAS THE BENEFIT OF ALL THE SODIUM CALCIUM ETC .ONE OF THE THINGS I LOVE ARE BANANAS AND STRAWBERRIES AND I WAS TOLD TO STOP THEM AS THE CAN CAUSE SEVERE ACIDITY ALONG WITH PROBLEMS IN THE BOWEL.

    MEDICATION SUCH AS IBUPROFEN ALSO CAUSES HYPERACIDITY REFRAIN FROM USING NUTS,BERRIES PEARS PASTRY STOP USING AND SEE IF THIS HELPS THE PROBLEM YOU CAN ALWAYS RE INTRODUCE AT A LATER DATE.

    YOU WILL  SEE IN MY DISCUSSIONS WHAT MY PROBLEMS WERE AND I AM NOT SUGGESTING FOR ONE MINUTE THAT THEY ARE THE SAME BUT I ALSO SUFFER FROM REFLUX WITH I.B.S BY ALL MEANS LET HER HAVE THE BUSCOPAN IT WILL DO NO HARM BUT YOU COULD TRY PEPERMINT TEA BAGS FOR A LITTLE RELEIF .

    WHEN NO ONE GETS  THE ANSWERS THAT THEY ARE LOOKING FOR  I.E. MEDICAL PEOPLE YOU COULD LOOK TOWARDS ALTERNATIVE MEDICINE NOT TO BE LAUGHED AT.

    I DONT KNOW WHERE YOU LIVE BUT IN SCOTLAND[GLASGOW]THERE IS A SUPER MAN CALLED JAN DE VRIES WAS A QUALAFIED CHEMIST AND BECAME A NATURAL MEDICINE GUY SUPERB.

    GO ON LINE AND YOU CAN READ ABOUT HIM AND WHAT HE ADVISES HE WRITES MANY BOOKS ALL WITH GREAT ADVICE AND ALSO HOLDS CLINICS WITH PEOPLE COMING FROM ALL OVER TO SEE HIM.

    DO NOT SLEEP FLAT RAISE YOUR PILLOWS AND THE BED SLIGHTLY TRY NOT TO EAT AFTER 7.P.M HAVE PORRIDGE FOR BREAKFAST NO COFFEE USE EXTRA VIRGIN OIL TO COOK WITH NO ORANGE JUICE AND PEEL ALL FRUIT.

    MY DAUGHTER GOT MUCH OF THIS ADVICE WHEN SHE ATTENDED ONE OF THE TOP CONSULTANTS HE ALSO RAN A BOWEL TEST SOMETHING ALONG THE SAME LINES AS THE ONE FOR OVER 60S BUT WITH DIFFERENT RESULTS HIS SUGGESTION WAS TO STOP THE ABOVE IN THE DIET AND AFTER SEVERAL WEEKS GRADUALLY RE INTRODUCE BY KEEPING A DIARY YOU CAN SEE IF THERE IS ONE CAUSE OR MORE.

    ONIONS AND ICE CREAM ARE OFTEN THE CULPRUTS.

    I COULD GO ON AND ON ON THE SUBJECT .

    I WISH YOU ALL THE BEST AND DO PLEASE TRY SOME OF WHAT IVE SAID

    BETH

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    • Posted

      Hello Beth, thanks very much.

      i know how awful this pain is having seen my partner go through it. I hope you are feeling better more often than ill?

      Bananas, croissants and ready brek are actually her safe foods, but onions and curries not so good. However, when she is well without an episode she can eat these? The most frustrating thing about this is that there appears to be no hard and fast rules, everyone is different.

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    • Posted

      Just reread your post.

      She has already done some of the things you've mentioned our bed has been raised at the headboard end, she's tried peppermint tea and ginger and many other remedies. I've been reading another post about pepsins, bile and hydrochloride. Also hormones leptin and ghrelin. Interesting stuff.

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    • Posted

      Onced diagnosed with Gastropresis, we call it gremlin and goat...ie ghrelin and leptin.

      I'd not want to suggest anything that would irritate the stomach, nor the entire digestive system...problems are what works for one thing conflicts with another...sometimes offsetting which leads one to belive it doesn't work.

      Keeping it simple...know there is a "status level" when one finds it difficult to continue a specific protocol when they "feel good" and just don't agree with the gradual process. They'll remind you I've always drank alcohol with meals?...If and that's not a big if...her stomach went into a crampping mode....its gonna take plenty of time for the muscles to sync again....Another hurdle you needed eh?

      Claudio

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    • Posted

      Thank you very much again donclaudio.

      ive researched some of the things you have said and they make sense.

      there appears to be nothing abnormal with the bloods and the endoscopy results haven't been communicated as yet. She had a swallow scan today and this appears ok also. Just a note to say she did drink lots of water and woke without pain, so it does appear that water at least dilutes the acid or mixture of bile, pepsin and hydrochloride? She is eating, little and often so fingers crossed she can ask the consultant some reall specific questions thanks to the info from your posts. Thanks very much indeed again.

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    • Posted

      so very comforted to learn she is "better" and will cross my fingers too.

      Have some questions....do you think she is a very fast metabolizer...natural or perhaps not so natural?..

      Re blood work:

      I have really pushed many to request the TSH when doing blood work..it's not standard...unless the physician determines (based on certain patient symptoms) its needed...polices are in place to refuse it.

      In our case, I pay out of pocket..but have suggested to others they "might" consider a "fib"..like sudden major fatigue (CFS)..

      . My reason is "thyroid the big time player in homeostasis"...

      Thanks for the good news...Claudio

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    • Posted

      Hello again.. I do think she has a very high metabolism. Food goes straight through her and she is hungry again. She displays nervous energy, and can sleep for 12 to 14 hours straight.. The amount of blood tests she has had, it would be incomprehensible for her not to have had a TSH test at some point, surely to goodness.
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    • Posted

      just another quick note, she also breaks out into sweats all over her face and upper lip at any given time for no reason whatsoever, we put this down to the onset of the change ,but we're guessing.
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    • Posted

      excellent guess....I'd put this down to "change" as well...has been on my mind to suggest DHEA with Diosgenin....but not as long as she is pre men. But you ought to check it out..I'm accused of being too conservative.

      Claudio

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    • Posted

      It is super difficult for me to drop the thyroid....its more than likely implicated.. my notes from 1989...Increased appetite. Nervousness, anxiety and occasional irritability, sweating, changes in menstrual patterns, bowel patterns, especailly more frequency.

      I discount the current condition caused by the caustic laxitive...was wondering family members having anything you can "tie" together ??

      Just as important for the moment is keeping her stomach lining as protected as possible...so it can heal..sooner the better. one insult can set you back some..see my note below...

      I've concluded you are her best chance.......she's d**** lucky....claudio

      I've a 36 year old chinese Wife/mother of 2 fab kids who flew in Sat for my help (10 days) via her husband. He said "she has become a "slug"...eats like a bird, sits on the can for hours, and just wants to sleep all the time"..been clinically evaluated and all lab resutls are absoutely "normal".

      Day 1...5pm ate a very small bowl of rice/vegetables/chicken..off to bed...till 10am next day(no BM)......fast fwd..Day 4..6 10 am..BM..normal..6 35am 2nd BM ok but somewhat loose (Told me with huge smile... "not this good for many many years")...8am...normal size bowl of well cooked oats with small adds of fresh ground flax, whey isolate, raw honey and milk.no issues...around 11 30 told me she was bloated...gas...stomach hurt....why? at 11 10 she made herself coffee and chocolate she had brought from home..had drank 1/2 of the cup and felt her stomach acid like.so stopped....suggested she drink water the balance of the day...she complied...7pm she ate a normal size bowl of yogurt..no adds...felt fine...big smile...She now understands whew...

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    • Posted

      Hi,

      One family member, (Uncle) who is being treated for Crohns disease, although not completely diagnosed.

      Her mother used to carry a tin of "Andrews powders" with her wherever she went. My partner uses this periodically still today.

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    • Posted

      Uncle too distant but Mom...big time...if she was born normal (not C section) she acquired her mom's gut flora...of course it then evolves.

      Gut microbia develop "fifdoms"...German study of implanted microbia

      demonstrated the implanted morphed into the native flora...

      The powders I will assume are some combo of bicorbonate of Soda, a buffer like Ca (calcium) and maybe other..please let me know.

      BS is a "quick fix"...after some time from 1 to 2 hours after a meal...we begin belching...stomach in combat...BSoda...super fast action..settles the fermentations..we feel just great...question? what toxins might enter the small intestinve having inadequate acids to sterialize them?

      These gastric juices of our are "barriers"...fuss with them...risky.

      Fast metabolization accelerates the aging process...you'll need to find

      a protocol and some help......I'm not qualifed...I recall only that it at one time required minimum sleep..like 5 hours....very high caloric intake, slow digestive foods like fats and oils...and no or very limited exercise. ..probably others I cannot recall.

      (again...if non hyroid involvement)...

      What a tough job you have..but finding the right help/stuff will get you much closer to achievement/s ..(Claudio

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    • Posted

      Hello,

      Andrews powders has three main ingredients. Sodium bicarbonate, citric acid and magnesium sulphate. You will know the first two are antacids and the last is a laxative. It's quite a mild mix and she does benefit from taking it when she's full of wind. Whilst she may have a fast metabolism she looks a lot younger than 40' her mother was youg looking for her age also. I have to laugh, as she has a high calorie intake, can sleep for the nation, does no exercise and eats fat and oils regularly.

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