Friendly little warning:
This is a typical ‘me’ blog – long and somewhat unwieldy.
Feel free to escape my mitherings and go to the bottom of the blog to explore a more ( I hope!) concise breakdown of H Pylori symptoms and links.
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Some time ago, in Croatia I had a couple of bad day’s gastrically. Sudden onset of feeling pain in my stomach and feeling nauseas. I doubled my acidophilus, took lot’s of yogurt and thought nothing too much of it. This often happens to me when I travel, so I did not blink or complain – just continued having a good time on holiday & it resolved within a day or two. Could it have been the start of H Pylori? I’ll never know.
My full blown troubles began with a sudden golf ball feeling in my throat. Not very comfy. I wondered if perhaps I’d overeaten.
The next morning my throat burnt like the blazers low down in my chest. I had difficulty swallowing anything. My voice became hoarse and I felt awful. Even water was an ordeal to drink but I kept forcing it down.
I went to see my GP. She gave me lansoprazole and a short course of low dose antibiotics. I became able to partially swallow again, which was a relief. I had strange sensations in my throat of food sticking and a weird feeling that my oesophagus had no motility. I managed very sloppy foods, but it took an age to eat them. Moreover despite antibiotics and PPI’s the burning in my oesophagus did not abate. It went from bad to violent, a searing agony in a few days. I tried stomach friendly painkillers but they barely took the edge off it. I started to get worried.
I contacted my surgeon, Mr Patel. He suggested I try omeprazole instead of lansoprazole and it did seem to improve the situation. However only slightly. I still had residual difficulty swallowing and the burning chest was fast becoming debilitating. I also developed back pain. As I associate pain on the front and back with an obstruction of some kind…I thought perhaps my old hiatus hernia had twisted in my chest…or that I might be having a heart attack, both were scary thoughts.
We had private medical insurance, but because Pete had just changed jobs we thought it might be no more. As it was we managed to arrange with his ex-company that we could retain it as long as we wanted. It’s a good thing Pete had left the company on really good terms! Anyway this enabled us to fast track things and we got an endoscopy and barium meal approved within days.
Mr Patel did the endoscopy and I woke up feeling only a little woozy. He said there was redness around the upper oesophagul sphincter and I had gastritis. We’ll have to wait for the biopsy results.
Meantime my chest was still burning with a gnawing pain , my tummy felt increasingly distended and raw. As though someone scalded it from the inside with boiling water. The pain was intense. I felt exhausted.
I begin to belch and retch frequently. What I found upsetting is that I smelt decay on the belches and in the mornings when I got up there was a vile odour in my bed. I developed obsessions with washing myself & the bedding. (Interesting is that when the doctor who found H Pylori swallowed the culture one of the things he said was noticeable was the smelly breath & bo. ..see link below for more info on this symptom of H Pylori.)
Some days I struggled with sudden intermittent nausea although I never vomited. My stomach felt weighty, sore and distended.
I missed my practice of joyful eating :-D although I had no physical appetite it was clearly psychological. I tried to subsist on soft yogurt and fortified milk. Meat was no go. Fat was no go. I managed a little saucy tuna and chicken livers, sometimes a little white fish and soft prawns. I was eating less than a quarter of my usual portion size and even that was an ongoing struggle.
During this time I discovered a cottage cheese at Tesco’s ‘light choices’ pineapple, mango, passionfruit. It comes in a smallish punnet and yields 14 gms of protein and I tolerated it well and ate it several times a day. I relearned the art of chewing to a watery pulp before swallowing.
My bowels became constipated and my stool output was frankly, pathetic for a DSer.
Most days I felt concerned about taking no vitamins and not getting enough protein. I started to lose weight fast.
Sometimes I think I get these things to ‘prime’ me for what it really feels like…you know, like bowel obstructions or H Pylori! Yep. Thank you Universe I love you too! So next time I say to someone with H Pylori, ‘ahhhh, you’ll just need some antibiotics then’, let me remember the worry, the disruption, the horrible difficulty eating and drinking and certainly not least the terrible raw pain of it all.
H Pylori is no blooming joke, believe me.
One night lying in bed burning with intense pain in my stomach area and now starting to feel pain lower down in my intestine to boot
I felt at my wit’s end. Having ruled out most mechanical type causes, except for a poorly functioning oesophagus sphincter, I began to wonder if a bowel overgrowth could attack the stomach and throat! Highly unlikely - but what if?
In the morning I called my GP and begged her for metronidazole and cipro for ‘possible bowel overgrowth’. She was very sympathetic but reluctant to prescribe anything. I guess from her point of view she has to be careful & can’t dole out antibiotics like sweets.
From my point of view though, I find it appalling that WLS patients cannot get the meds they need for common problems that cause great distress. I think all WLS types that are prone to SIBO should get a letter stating that sometimes antibiotics are required for this, on discharge from the hospital, to be put on the GP’s database.
Anyway - I didn’t bother trying to argue much, tbh I was just too tired – instead I wept slightly hysterically, I am embarressed to admit.
ops:
I am beyond exhausted, I am in dire pain, I feel malnourished, I was supposed to be in Cape Town already, but am too ill to even travel anymore. She hesitantly prescribes the two drugs I asked for, metronidazole and ciprofloxacin. I’m not happy to find they are low dose but hey, beggars can’t be choosers. Better than nothing I think. I start them. By day two my burning chest is considerably better – I can swallow freely. I congratulate myself heartily…thank the gods there is light at the end of my tunnel.
This is when I know I have a bug of some kind. But H Pylori still does not cross my mind!
Later on day two I get the biopsy result stating I am H Pylori positive and must get eradication therapy. It’s a huge relief to know the exact bug and that I can get it all sorted out. It’s also good to know they have not yet caused damage in my gut (ulcers, more rarely cancer) – may they never get chance either.
I call my GP with the results and as of yesterday I’m taking course of proper strength metronidazole, clarithromycin and PPI’s.
In South Africa I will follow this up and check if I am clear. I have a wonderful GP there. I trust his judgement in the same way that I trust Beth’s and Mr Patel’s.
It is early days. On the higher dose I am currently hugely bloated(think twins full term!) and have lot’s of gurgling gastric noises, a massive barrage of wind, constant (but totally smell free )diahorrea. I think there is big die off of all manner of nasty bugs going on. Good!
I’m achey & still feel very tired but hey, after everything this past month, I don’t really care! The big one is that I have almost no burning pain left in my tum/chest area which is amazing. I do feel tender still, but it is only 2 days in! I am feeling much much better.
With any luck the high dose will kill the little screwfaced torpedo boogers dead in their burrowing tracks. Note – if you have them don’t even look at a microscopic pic of what they look like – my skin is still crawling!
I have results so I’m highly optimistic and hoping that this is the problem that has given me such misery…but time will tell.
At the Barium meal, the radiologist did say my upper sphincter was barely working & there was inflammation there.
This still concerns me just a teeny bit – but I am thinking if the Pylori were in that upper sphincter area they could well have caused malfunction. I just hope it is temporary and that my sphincter resumes normal function once my gut is less inflammed and irritated. Fingers crossed. If it does not I might need the PPI’s longerterm – not my best thought of the day!
Being me, in case of mechanical reflux issues, I had already researched a nifty promising gadgetry called the Linx which I briefly discussed with Mr Patel who does the procedure. ( Double luck!!!)
http://linxrefluxsurgery.com/about-us/mr-ameet-patel
Research it if your reflux is caused by mechanical issues…it has some cons but overall if I was desperate I would very likely go for it. Hopefully mine is all pylori though..but one never knows!
WHAT I HAVE LEARNED:
*Your GP may be smart and get you the right tests but many times they will just say ‘ah yes, you have reflux’ and give you PPI’s. I saw two GP’s and neither suggested H pylori (despite me having all the symptoms). Ideally one would see a gastroenterologist, but the rub is one could wait for 6 weeks for an appointment on the NHS. I honestly don’t know how one would do this given the pain, but then I should – seeing as we have people with possible bowel obstructions waiting for weeks for appropriate diagnostics. It’s very unfortunate.
Fair enough to prescribe PPI’s as a first approach treatment – to a point. However, I’m not really satisfied with ‘you have reflux, so off you go and live on meds approach’ – I want to know what is actually causing the reflux, but that’s just me. So, if you find you are switching to other PPI’s and they are not really helping you – ask for H Pylori tests and expand from there to other tests if you don’t have H pylori.
I have always said to my peers – your body does not tell porkies. If there is severe discomfort that lasts or pain something is wrong. Chase it. Track it down. I know it is no fun to feel like a pushy whatsit, but consider your alternatives…are you willing to just live with the pain/discomfort? Some people live for years with no concrete diagnosis, it is very unfortunate. I chat with them quite often and it is very upsetting that this happens mainly because they are such a lovely unpushy but often far too accepting types.
Find someone with the medical ability to help you do so. This can be tough as it involves much change, much searching around and when one is below par it is a big effort. Look for GP’s, surgeons etc who think outside the box. I’m very grateful that my surgeon Mr Patel takes an investigative approach to pain that is not based on guess work but on getting the diagnostics done. It was his idea to do a biopsy for H Pylori & I am so pleased and thankful he did!
* There are many reasons for gastritis . WLS patients can get gastritis caused by pernicious anemia. It could be a virus, it could be reflux due to poor food choices. But it could be H Pylori. Test for pernicious anemia and H. Pylori first, you may save time and money.
*Bacteria can cause extreme pain. Yes, I did think maybe I had cancer. At one stage I thought it might be my heart. The chest area holds a number of vital organs and pin pointing severe pain can be difficult. Also do not underestimate H Pylori caused pain, it is something I hope I will never experience again.
SHORTLIST OF MY SYMPTOMS:
Bear in mind this is what I experienced – mileage can vary somewhat, so research what others experience too .
Difficulty swallowing
Pain in oesophagus and stomach
Gastritis
Feeling of very distended bloated tummy.
Very early satiety ( I think caused by the gastritis) and no appetite
Retching, Nausea, belching, vile odour (breath & body)
Exhaustion…brain fog…exhaustion
H PYLORI LINKS:
http://www.aafp.org/afp/2007/0201/p351.html
http://www.helico.com/
http://en.wikipedia.org/wiki/Helicobacter_pylori
http://emedicine.medscape.com/article/170066-treatment
Interesting case study involving H Pylori and halitosis.
http://www.helico.com/case_study-01-halitosis_and_hpylori.html
Breaking Press about the possibility of type two diabetes being linked to H Pylori:
http://zeenews.india.com/news/health/diseases/scientists-uncover-gut-bug-linked-to-type-2-diabetes_16036.html
Notes:
Having watched several of Dr Marshall’s video’s ( he is the doctor who discovered H Pylori) I started to wonder why if the bacteria were creating an achlorhydric environment (low acid) do we need to use PPI’s as part of the antibiotic therapy? It seems reflux is not the problem here so theoretically we should not need acid inhibitors.
Well, it seems that for the antibiotics to work effectively maintaining a PH above 4 is important.
http://www.medscape.org/viewarticle/457393_4
This made some sense to me.
Possible nutritional impact of H. Pylori and treatments such as PPI’s:
One can really struggle to get enough protein into one’s body. Do use a protein drink, I had milk enriched with marvel and used Nectar protein a few times. I also had Dietimeal caramel puddings, egg custards and protein enriched soups. I had to resort to old post oppie tactics – such as using parmasan cheese in my soup to push protein. Shepards pie sat ok,white fish & soft prawns were manageable.I had a lot of homemade chicken broth. Oat’s porridge, strained and mixed with marvel sits well.
Eat frequent small sloppy meals. I know it hurts but keep trying regardless.
Keep fluids up.
I did not take any vitamins and am not taking them on the course of antibiotics either. I just cannot tolerate them right now. You may be able to do so – if so take them with lot’s of water.
I’m not personally a fan of low acid environments which both H Pylori & longerterm PPI’s can cause. I wonder if they allow bacterial overgrowth to become problematic, there’s some evidence out there to suggest this. Also being a big user of certain minerals such as calcium and iron I wonder if I lower my ability to absorb them effectively. There seems to be some evidence that H Pylori can cause anemia.
http://www.ncbi.nlm.nih.gov/pubmed/19787827
While this might mean little to anyone other than a malabsorber, it’s of a big concern to me. Protein requires acid to break it down too – again important for a DSer/ WLSer . Sometimes PPI’s are the only way forward, I understand that – however monitor your albumin, calcium and your iron levels if you use them longerterm.