Only registered users are allowed to post. To register, please click here

Should you have any problem in posting, registering, or login, please do not hesitate to contact the admin at Marshall.centre(at)gmail(dot)com. In the subject, please use "Help needed for"

Advertisement is not allowed. While we encourage discussion, please try not to promote your website, goods, or unproven treatment here.

This is a non-profit website. We will try our best to help anyone that has question about H. pylori and their treatment. We shall provide the most accurate answer about H. pylori. You can help us by clicking here to keep this forum alive.

Some useful guides
How to post in the forum?
Management of Helicobacter pylori infection—the Maastricht V/Florence Consensus Report
The 5th Chinese Helicobacter treatment consensus
How long should I wait before doing follow up breath/stool test?

If you are confirmed with H. pylori, in your convenient time, please help us with the symptoms survey that you are experiencing.
Symptoms survey
(contributed by frostyfeet)

若有困难注册,请联络站长 Marshall.centre(at)gmail(dot)com。标题请用 "Help needed for"

欧洲幽门螺杆菌治疗共识 5

Handling the Physical and Emotional Pain of Recovery

New things in the forums might be highlighted here. Take a look at the avatars! Get yourself one, there are hundreds to choose from.

Moderator: barjammar

Post Reply
The Professor
Posts: 2
Joined: Sun Aug 21, 2022 9:43 pm

Handling the Physical and Emotional Pain of Recovery

Post by The Professor »

First, I'd like to say that this form is a godsend. As others have said before, this bacteria is a devil and very few people understand what it's like to do battle with it. My story is the common one: two years ago I began to experience increased gas, bloating, etc. I didn't think too much of it — I thought I was simply just getting older and it was something I’d have to get used to. I experienced a bout of weight loss, but I attributed that to a medication I had taken. Once I stopped the medication, the weight loss stopped—or at least I stopped paying attention. Then COVID hit the world and my diet changed, and life became extraordinarily more stressful and I lost more weight. I understandably attributed this to not taking in as many calories and being under stress. I didn't put the symptoms together or think about them really, but my symptoms got worse (In retrospect I was in denial, fearing that something serious might actually be going on). I tried elimination diets and adding fiber and probiotics, etc. Nothing seemed to work. Finally, I had an episode of constipation that was so bad that it sent me to my physician, who ordered a stool test, which returned "weak" for h pylori. The physician's assistant who was handling my case said that it was a common bacterial infection, and that a two-week course of antibiotics and an acid reducer is the standard course of treatment. I felt pretty good about that; I finally knew what was going on, and that there was a straightforward treatment and I would be getting better soon. I had no idea what I was about to go through.

I had never taken antibiotics before; the two weeks were a hell of side effects but I took every pill. I waited five weeks before taking a breath test and it came back negative. Awesome! In a couple of weeks I was going to be myself again! Again, I had no idea what I was about to go through. The course of antibiotics and their side effects had essentially changed my gastrointestinal system. I never had stomach acid issues before, and now I did. Things that I was able to eat and drink with no problem at all — coffee for example — were now a problem. I could feel stomach acid in my throat from time to time; that never happened before. It now took four or five movements to empty my bowels in the morning. Another new thing. I understood that antibiotics wreak havoc on your gut biome, so I had continued to take my 60 billion CFU probiotic. Other than that, I made few changes to my lifestyle over the next four weeks, with the exception of giving up coffee and carbonated beverages. Here is where my physician's assistant failed me. She had suggested no dietary changes at all, or to put me on a non--PPI acid reducer (so as not to compromise the breath test) in the weeks after I had finished my course of antibiotics, things that could've sped up my recovery — from all I've read here. I finally started PPI two weeks ago, and just this week finally decided to crack down and put myself on the diet recommended for GI issues. The rational me realizes that it hasn't been all that long (2.5 months since diagnosis), and that I've been extraordinarily lucky: my symptoms are relatively minor compared to the suffering others have related on this forum; moreover, I'm a college professor and I'm on sabbatical so I have a year to get over this. The problem is, the rational me is not in charge much of the time, and it's because of all of the physical and emotional pain I go through each day.

I should say that for fifty-eight of my sixty years I enjoyed extraordinarily good health — I didn't even get colds! I have avoided Covid so far, I have been working out, lifting weights and running, for over forty years. So I'm not used to illness, much less one that under the best of circumstances will take months to recover from. In terms of the physical symptoms, there's always something going on every day. I can't make plans in the morning because of the need for multiple bowel movements; the afternoon is when my symptoms are at their worst. Normally, 2 to 3 hours after I eat, I'm going to experience discomfort and slow digestion that feels like bloating that can last anywhere from twenty minutes to an hour or more. If I'm going to have a stomach acid episode, it will be in the afternoon right around 4 o'clock. So I don't make plans for the morning, or the afternoon, which is spent watching reruns of my favorite show on television. Even as I write this, I feel like something of a weakling. These are not the worst symptoms in the world, and yet having stomach discomfort almost constantly is hard to escape. How can I hang out with friends in the afternoon or take a trip into the city when I know the entire time my stomach is feeling bad and will feel worse? How can I laugh and make jokes when on the inside I feel anxious and depressed? I know I should just "put it out of my mind" but I really can't. Your stomach is like your lungs: something you don't think about at all until it's not working quite right. Because the discomfort is constant, it's constantly on my mind. Moreover, there is the reality that I'm not in control of this — at least I don't feel that way so far, given what's happened. For example, we should eat a high-fiber diet, yet much of the discomfort I experience is trying to digest fiber (I will say, I've never eaten much fiber all of my life and have only attempted to do so through supplements within the last year.) I know I will have to get my daily fiber intake up to the required levels and that will probably take care of my bowel issues. We shall see...

Also, the discomforts can be slightly different each day, even when I eat the same things, so I can’t get used to them. Every morning and every meal brings, “What’s going to happen?” The only thing I can predict is I am going to have stomach and bowel discomfort of some sort. This experience has led to anxiety because I'm always in my head (a hazard of the academic trade) so this is all I think about, every waking hour. (I’m also an insomniac and this has made that condition worse.) At the same time, I'm fully functional, getting done what needs to get done. Another aspect of this is with every other condition I've had you can see improvements more or less day by day. I had a hernia repair surgery last year, and within a couple of days I was walking a few miles and with each day the pain was a little less. That's been my experience with illness. I have no experience with something that will probably take months before I start to feel normal. And that brings me to the worst part: the fear that I will never be normal again. That's how it feels right now.

This has also caused me to socially isolate myself. One of the consequences of this bacteria is that I've probably lost over thirty or forty pounds over the two years — a good bit within the last three months, especially during the antibiotics. Everyone who sees me remarks on it and asks me if I'm doing okay. I know they mean well, but that has made me really self-conscious and not want to be around anyone. I don't like looking at myself in the mirror because I really do look sickly, cadaverous in my eyes. (Even though I’m not—it’s just compared to what I used to look like.) My clothes are hanging off me. How can you gain weight quickly when eating is the source of your pain? I've been drinking a bodybuilding protein drink since the end of my antibiotics course, but I'm lactose intolerant so that's been an issue — even when using digestive enzymes. I just ordered a new vegan alternative. I just pray that I can digest it. So much social interaction revolves around food (something else you don’t normally think about), people inviting you out to lunch, dinner, drinks, or barbecue. I decline all of these invitations because I can't eat anything that will be there, and I'll be uncomfortable and in a depressive mood (or faking happiness) the whole time anyway. At this point I just want to hunker down, take the time I have, and just get myself better.

So that's where I am: a guy with a minor case of h pylori— if there is such a thing — with the time and resources to recover, and yet who is physically and emotionally drained and miserable and wondering whether he will ever be the same. I judge myself. When I read about the extraordinary suffering of people on this forum, I think "How weak are you? Just get over yourself and get on with it!" I know I shouldn't, because suffering is relative, and yet I do. I feel out of control of myself, when I've always been the strong one, the one who can figure out a plan and stick to it. I’m drained, exhausted. It’s only been three months, but it feels like three years. (Well, it has been three years of suffering so…)

So how do all of you deal with the physical and emotional pain of recovery? I would appreciate replies both from forum members and experts. Please share your stories and expertise. I thank all of you and good luck to everyone.

Post Reply

Return to “Hot Topics and Common forum Issues 热门话题和常见问题”