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My HP story

The cure of Hp usually requires antibiotics. Other things have been tried and have a weaker effect.

Moderators: Toni, barjammar, luci2010, Ondek-Expert, kkimura

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webtoy100
Posts: 4
Joined: Thu Jan 09, 2014 12:59 am

My HP story

Post by webtoy100 » Wed Feb 19, 2014 12:18 am

Firstly, thanks to Dr Marshall and Helico_expert for running this site. A really valuable resource for which I for one am very grateful.

I thought I would share my (long) story – I thought some might be interested in my observations and thoughts. I certainly found it useful to write, and I hope it’s of use or interest to some.

I’m 42 and live in London. It started at the end of October 2013: persistent nausea, not alleviated by anything. I went to my GP, and he gave me omeprazole which helped a bit for a short period. But then it stopped helping, and I was referred to a GI specialist.
In December the specialist performed an endoscopy, which found moderate gastritis and duodenitis, and CLOtest positive for helicobacter pylori.

I was given triple therapy for 2 weeks: amox, clarithomyciin, and lansoprazole. My symptoms were alleviated somewhat during the course and immediately after, but then the nausea returned big style a few days later. Nausea was worse in the morning and after eating. Nausea is my only symptom. I’ve never had any pain.

I felt miserable and turbo-surfed the web, looking for answers and help. Probably too much! My specialist said that HP was not like a chest infection which just got zapped by antibiotics and you went back to your life: recovery takes time. Still, I think he’s surprised that I’m not fixed.

I had zero appetite, just the idea of eating made me feel sick. I would go for days on just a banana or two per day. I did force myself to eat light foods, but it wasn’t much fun. I was actually sick on a few occasions after eating.

I lost about 15kg in a 6 week period before the endoscopy and after, about 15% of my total weight (I am 188cm). Normally I would be happy, but the manner of me losing it didn’t make me happy! Some people would complement me on it, but I would just see the weight loss as a sign that I had a serious illness.

Other tests:

To put my mind at rest my specialist put me through a ton of tests. I have private medical insurance thank God so all this happened quickly: multiple blood tests, ultrasound scan of my abdomen. I even had a MRI brainscan. This was a rather scary experience as you have to stay still for around 30 minutes and the tube you lie in makes diabolical sounds as the magnets do their work. All the tests came back normal though which helped put my mind at rest to an extent.

Medicine:
Medicine wise, I have experimented with most of the PPIs, but am not on any right now. I found Nexium made me feel sick as it’s very strong. I am currently taking just 75mg of Zantac (H2 blocker) in the morning and again at night.

After the triple therapy I experimented with taking probiotics, zinc carnosine and L-glutamine but can’t say for certain if any of them helped very much.

In terms of anti-nausea pills, I think the two I like best are cyclizine and domperidone. I would take a domperidone 30 minutes before eating, which I think alleviated the nausea, and would take the cyclizine as needed. I think it has a useful placebo effect too.

I tried metoclopramide but it made me very restless and I couldn’t handle this: made me go on long walks all the time which I didn’t enjoy very much.

I have been on a small maintenance dose (3.5mg) of the anti-depressant mirtazapine from many years ago. I researched this drug more and it has many (sometimes useful) side effects: appetite stimulation (good for when you don’t want to eat), anti-nausea effect (obvious), and sedation (good for sleep problems).

I realised that all 3 could help me, so talking with my doctor resolved to increase my dose, and am now on 22mg, (15mg at night to help nausea and sleep, 7.5mg during the day (to help nausea)).

Has it helped? I think so. I would recommend people consider mirtazapine if they have similar problems to me. It is a special, modern class of anti-depressant and has much fewer toleration problems than SSRIs (Prozac etc.). You will (probably) gain weight on it, but I suspect this aspect might be warmly welcomed by many in these parts! If weight loss is an issue and/or nausea and/or insomnia, discuss the option with your doctor. Needless to say, it should help with your mood too, and is usually quite fast acting in that regard too.

Therapy:
I felt dreadful and depressed for many periods: that I would be ill for ever.

I did pay attention to the psychological side, and found online an excellent, understanding and kind hypnotherapist who lives nearby. I have had success with hypnotherapy in the past and found this very useful to discuss my feelings. The only trouble is that she was quite expensive, so I couldn’t make a habit of it.

Conclusions so far:
Time is the main healing agent. When I compare myself today (still not 100%) with a few weeks ago, I am considerably better.
I am now a month on from ending my course, and had a urea breath test which came up negative. Hurray! In the past week or so I have felt somewhat better and my nausea has become a bit milder, and perhaps less frequent. I have more of an appetite more often, and I am eating more normally. I am still being very careful of my diet: no tomatoes, no alcohol, no coffee, nothing acidic. My lifestyle is very sedate right now: no partying etc. I don’t mind as right now I want to focus on getting better. I have become a bit of a hermit, but I haven't really been in the mood to hang out with friends, and I think they understand.

What I have learned:
I feel I am more understanding of people, and I pledge to never to take good health for granted. I used to abuse my body far too much: too much drinking, smoking. I won’t be going back there anytime soon. I have lost a fair bit of weight, and indeed am now in the ‘good weight’ category on the BMI index (I was overweight before). I want to keep this weight off, but as part of my recovery and not as part of ongoing illness

This is a slightly open-ended illness. Easy, straight answers are not always forthcoming. Like many people, I have clutched at many straws. In the age of Google, this is almost inevitable. I was forever looking for instant cures (manuka honey, mastic gum, slippery elm etc. etc.) but I don’t think any really exists for the nature of this illness. If you have an inflamed stomach, it takes time to recover.

I have felt desperate and desolate. I have good days and bad days, and try to accept them both. If a good day I say to myself “this is nice” and if bad say “that’s a shame – but I’ll probably feel better later on/tomorrow as this is what’s happened before.”

I occasionally feel better and take some risks: I had tomato ketchup the other day, but paid a big price for it. You will go up and down, but generally the graph will be on an upwards direction. As Helico_expert has said, once you get rid of the HP you usually won’t get any worse and nearly everyone feels better, though usually slowly.

So I try and stay positive. I believe - and hope! - that I now in the second half of my illness.

I try and take one day at a time – do not extrapolate how you feel today to “every day in the future” – this is unlikely to happen.
Leading on from that, do not catastrophise. Don’t assume you have a dire illness. Have tests to put your mind at rest. In particular, have an endoscopy so your doctors can ascertain for certain the situation in your stomach.

Don’t be angry at your illness; this is a phase in your life and sadly we must deal with it. Lots of people have long drawn out illnesses, but yours is unlikely to last forever, and compared to some, isn’t massively serious. The best approach is to view yourself as a manager of a situation: step back a bit, and think about the best way to manage the illness and its symptoms.

My real solace has been support from my family and friends. My work has been very understanding too and didn’t mind me taking time off as I felt too sick to work just after the triple therapy. I also stayed with my elderly parents for a couple of weeks – really nice to spend some time with them for the first time in years, and benefit from their wisdom, and they gave me good advice for my anxiety.

Another very useful thing: getting seriously stuck into some good books on my favourite history subjects: really helpful in distracting me in the evenings, and also reminding me that most people have undergone far worse things than my chronic illness in their time… I also watched some engrossing TV with my wife, notably the Bridge 2 (Danish TV detective series) which I recommend.

Finally, I think it’s useful to look forward to getting better, one day at a time. On the various message boards around this subject, it’s interesting to note the people who turned up a few times over a few weeks or months, and then disappear: these you can be sure are people who had the illness, and for whom it resolved. The people who have had it for years seem to be very much in the minority, and with many of them they are better than they were from what I read. If you look at past messages on this board you can see this – a lot of people post about 2-3 times, and are then gone.

On the subject of messageboards, be careful about spending too much time on them, as they can get addictive but often comprise of people bouncing ideas (and often horror stories) off each other. This messageboard is great because the level of the debate is much better, and the kind expertise of Helico_expert and others is a valuable resource for which I for one am very grateful.

I have been largely lucky with my doctors but I am surprised that in London, for example, there doesn’t seem to be a “goto” person who is expert on HP/Gastritis from what I can see. There are plenty of GI specialists in London of course, but they mostly have wider interests. It is also interesting that there are few books on the subject either.

A few questions:

1. If you had HP, did you have nausea as a symptom?
2. If you had the eradication therapy, did you still have nausea as a symptom?
3. If the nausea went away, how long did this take?
4. Does anyone have any general tips for recovering stomach after HP eradication?
5. For Helico_expert, is nausea common before and after HP in your experience? (it seems to be)
6. Again for Helico_expert, are there any other treatment routes worth exploring at this stage other than just waiting?

Thanks for listening,

WT

Helico_expert
Site Admin
Posts: 2171
Joined: Wed Mar 02, 2011 7:20 am

Re: My HP story

Post by Helico_expert » Wed Feb 19, 2014 11:47 am

Thanks for sharing your interesting and detail story. I think you are on the right track. Being positive and understanding of the current given situation.

Answer to your questions.
1. HP can cause nausea. The kind of feeling that you want to vomit but cant. However, not everyone has the symptom. Some people carry it for life without any problem and hence not knowing they are infected.

2. Some people experience reflux after eradication therapy. Some people experience nausea during the antibiotic treatment. unfortunately the reason is unknown.

3. I believe that's individual dependent. I think one of the member in this forum mentioned that he only get back to 100% after 3 months.

4. Probiotic may help replenish the good bacteria after the heavy antibiotic treatment that knock out everything in the gut system. Otherwise, alternative remedy such as ginger, mint, honey and etc may help.

5. It may be true, but we usually see patients that comes in with a problem. So, it is more likely to hear them complaining the symptoms. I think, if we speak to all the infected patients, there will be a greater number of people not experiencing any problem (or they simply got used to it).

6. for the standard guideline, there is nothing else to do. You have done the follow up breath test which showed that you are negative of H. pylori now. You have also done all the blood test and scans to show that you are healthy. You also mentioned that your BMI is now perfect. Lastly, you mentioned that you stopped alcohol and smoking and is focusing on getting healthy. I think time is the healing agent as you said. Other methods I can think of are maintain the positive thinking, the alternative remedy, lots of fruits and vegetable, and frequent exercise.

webtoy100
Posts: 4
Joined: Thu Jan 09, 2014 12:59 am

Re: My HP story

Post by webtoy100 » Wed Feb 19, 2014 5:15 pm

Many thanks for your kind reply, and expertise as ever!

WT

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