What It Feels Like to Be on Long-Term Antibiotics

Being on long-term antibiotics is, of course, not something anyone wants to do. Yet it can also be an absolute necessity for some of us to treat difficult infections.

This is my experience of being on long-term antibiotics several times for bladder infections. It is often a difficult time, both in terms of feeling unwell in terms of physical health and from a mental health perspective too. It is hard to take a medication that people have such strong opinions about, even when it is essential for your health.

A diagnosis of interstitial cystitis

When you live with multiple chronic illness conditions, it can be easy to overlook a symptom (or two, or three even), in my experience at least. The most difficult get all my attention but the less pesky ones get shoved to the back of my mind, with the thought that I should deal with it. But just not today. When things are better. And I have time. And patience.

It was this way with bladder symptoms. I knew I was getting pain, a deep lower abdomen pain that was likely my bladder. And I knew I seemed to need to go to the bathroom rather frequently. But I shoved it to the back of my mind as I was in the midst of dealing with POTS, vestibular migraine and a few other diagnosed conditions that were tough enough. Then my cardiologist asked about my bladder and I went along with the referral to a uro-gynecologist.

Things moved quite fast, and I was soon having a cystoscopy which showed inflammation and infection, as well as other tests.

Prescription: a three-month course of antibiotics

My cystoscopy results led to being prescribed a three-month course of antibiotics, cycling between three different types for two weeks each and then repeating it.

I was aghast at this treatment plan to begin with. After all, we are told that we should reduce the number of antibiotics we should take and there are implications for our gut health too.

Yet it was also the case that the infection needed to be dealt with, not least of which because it was potentially driving, or at least complicating, my mast cell activation syndrome.

I took the first tablet with great reluctance. The thought of 90 days of antibiotics seemed like a huge mountain to climb, and I was anxious about side effects.

Side effects

My first question to the doctor had been the same as I suspect it is for many of us: what are the side effects? I was told potential nausea, upset stomach and headache, amongst others.

The first antibiotic I took was a breeze. It was the strongest, but I was fine. In fact, my IBS stomach was as happy as larry on them. I had fewer IBS issues and was almost happy to be taking them.

Then I hit a stumbling block. Antibiotic number two made me nauseous. Really nauseous. On day three I was barely able to move off the sofa, and on day four I was sick. A call to the doctor meant a change in the antibiotic, which worked out fine.

It felt like a long time

Ninety days is a long time, but I know many in the chronic illness community take antibiotics for far longer. It can be years sometimes, to try and get on top of embedded infections for various medical conditions. In comparison, 90 days is just a drop in the ocean.

For me, it felt like a long time, mostly because I was worried about gut health but also because of having to time taking the tablets around food. Some you took an hour before, others an hour after. It was all very confusing.

Key tip: use the alarm on your phone to remind you to take the pill!

And since then…

Since that long-term course of antibiotics, I have had to do the same regime again once, and taken antibiotics at other times for shorter periods too.

One year, I calculated I had been on antibiotics for more days than not. It isn’t a nice feeling, and brings worry about overall health, but I knew it was absolutely necessary for me. Aside from bladder issues and recurrent infections (UTIs), I also managed to get infected bug bites several times and a skin infection too.

It was a worrying time, and I am sure that being on antibiotics was making me more tired, giving me more headache / migraine days and was problematic for my gut.

Ignoring the opinions of others

One thing that did upset me during my time on long-term antibiotics was being told over and over by people that I shouldn’t be taking them. I mentioned it on my Instagram and had DMs from people I didn’t know (they didn’t follow me, or vice-versa) and who didn’t know why I was taking them that I was being “stupid” and it was bad for my health.

Those kinds of comments are always hurtful and make me a bit angry too. It is upsetting to be criticized for trying to manage health conditions, and any form of pill-shaming can make a person feel wrongly guilty or less than for taking prescribed medication.

I knew my doctors were being incredibly careful about my antibiotic use and were prescribing them because there was no other choice. It wasn’t done without thought and care.

I had to take a deep breath and realize one thing: at that point, it was the best thing for my health to be on the antibiotics. I had infections that were causing harm and there was no other option to treat them.