Alison’s Chronic UTI Story

07 Jan Alison’s Chronic UTI Story

Reading Time: 11 minutes

Alison was in her mid-20s when she was struck with her first UTI.  A standard three-day antibiotic treatment cleared her symptoms, but they returned soon after … and were much more serious.  Unbeknown to her, Alison’s bladder infection had ascended to her kidneys and had become life-threatening.  With little forewarning, she was hospitalised numerous times with sudden acute attacks of pyelonephritis and sepsis.   Each stint in hospital meant weeks of recovery time at home.  Alison’s mum knew it was not normal for a young, active woman to have become so suddenly vulnerable and seriously ill.  Through a GP friend, she learnt about a UTI specialist in London and booked an appointment for her daughter immediately.  Alison and her mother are both sharing their compelling story.

 

I had my first-ever UTI on New Year’s Eve 2013

I guess I should start this piece by introducing myself! My name is Alison and I’m currently 29, working in London, and I have always been very active sports-wise and socially (you’ll definitely hear about that in my Mum’s note!).

This journey began for me on New Year’s Eve in 2013.  I was 24 and had never had a UTI in my life. I was in Dublin with my two best friends ready to sample the guinness and dance the night away to the Irish bands in all the pubs. In the end, I actually spent the day and night in a hostel drenched in sweat, shivering and crying. I can honestly say I had never felt that ill before in my life. I managed to ride it out and after a few days back home I felt fine again.

The symptoms returned a few months later.  I went to the GP where I was diagnosed with a UTI and given a three-day course of antibiotics. It is probably good to point out that this is the only time I was diagnosed with a UTI throughout this whole process (until meeting the Prof). Again, the symptoms cleared up and I carried on as usual. I can’t remember exactly when, but there was another trip to the GP with the same out-come, I think a few months after this.

I actually spent the day and night in a hostel drenched in sweat, shivering and crying. I can honestly say I had never felt that ill before in my life.

 

My sudden UTI attacks were becoming serious and life-threatening

My sister-in-law was coming to stay with me in London, so I went to meet her at the tube. I had told her I hadn’t been feeling well so we were just going to stay in and watch telly. I remember being stood at the top of the steps at Brixton tube when I suddenly felt really nauseous. The next thing I knew, I opened my eyes and I was on the floor. I tried to stand up and just collapsed again. The paramedics turned up and checked me over.  They couldn’t find anything wrong with me so sent me on my way, having decided I probably hadn’t eaten enough.

A couple of weeks later I kept collapsing at home.  Having taken the day off work I was on my own, so called Mum. She got on the train down to London and we got in a taxi to Kings College London. Here I was diagnosed with pyelonephritis and put on IV antibiotics and fluids. I stayed in hospital for three days before heading home to my parents for three weeks. I must admit, I was completely out of it. I slept for about 18 hours out of the 24 in the day and ate about half a slice of toast and half a yoghurt a day. I remember mum taking me to the garden centre and I had to sleep for three hours after it—we’d only been there for 15 minutes! After the three weeks I went back to London and back to work.

The next episode happened that December. I was back in Kings College for another three nights. I rapidly deteriorated in the A&E waiting room and ended up contracting sepsis, so found myself in intensive care. Again, I was diagnosed with pyelonephritis and this time I had a CT scan and an ultrasound that showed no signs of any physical abnormalities. After crying (A LOT!) they agreed to discharge me on Christmas Eve. Another three weeks at the parents’ and then back to London. I was very fortunate that my work was so understanding, and they allowed me to go back to work on shorter hours for a few months.

By this point I really had no idea what was going on. The hospital was organising a lot of invasive tests.  To be honest, I had none of the day-to-day symptoms of a UTI so that thought never crossed my mind. I guess I consider “normal” UTI symptoms to be burning, high frequency etc. but like I said, I’d never had a UTI before. My symptoms were extremely high temperatures, becoming lethargic, nausea, headaches and so on.

I had another stint in hospital in the January followed by another month at home (I’ll let mum mention my over ambitious ski trip after sepsis in December!). It was in these stints at home where I probably felt my lowest. You start to feel really isolated.  It was frustrating watching all your friends living normal, care-free lives via social media. Of course, it’s not their fault, but you do start to wonder why at the age of 25 you’re stuck at home feeling like crap and no one else is!  It was after this third hospital trip that my Mum got in touch with Professor Malone-Lee.

I rapidly deteriorated in the A&E waiting room and ended up contracting sepsis, so found myself in intensive care. Again, I was diagnosed with pyelonephritis and this time I had a CT scan and an ultrasound that showed no signs of any physical abnormalities.

 

After several stints in hospital, a specialist finally diagnosed me with a chronic UTI

I went to see the Prof (as we all call him!) and it was such a relief to have someone say they knew what was going on. In hospital, none of the doctors or nurses had ever diagnosed me with a UTI, probably due to the lack of result in my urine and the severity of my symptoms. The Prof said I had a chronic UTI. He took a urine sample and counted the number of white blood cells and epithelial cells (under a microscope). White blood cells mean that there is infection present. Epithelial cells mean that the bladder lining is shedding itself to try and rid itself of harmful bacteria. (There is obviously a much more scientific explanation, but this is what I understood!)  He explained how stubborn the bacteria sat in the bladder lining causing the infection were, and why short doses of antibiotics weren’t working.  He made me understand how the E.coli, in my situation, lay dormant in the bladder lining and flared up when left to their own devices. In my case, this caused my acute symptoms. This is why there is a need for long-term antibiotic treatment as the bladder lining will not shed all the harmful bacteria in a two-week period (for example).

 

Once on treatment I started to feel better and had no further serious, acute attacks

I was on (full-dose) antibiotics prescribed by the Prof every day for four and a half years. I learnt to manage my prescription based on how tired I was feeling or if I had spikes in temperature. I definitely had moments of not feeling well at all, but I have so far never ended up in hospital again.  I was renowned for asking “is it hot in here??” to try and gauge whether I was sweating because it was warm, or because I was unwell!

I gradually started to have more energy, and if or when my temperature spiked, I would just double up my antibiotic dose. These episodes really started to happen less and less in the last year and a half, until they pretty much stopped altogether. One thing that did seem to linger a bit longer during treatment was pain, or often bleeding after sex. I would say for about two years during the Prof’s treatment, I could rarely have sex without it being really painful. I would then feel ill afterwards. I’d tend to feel shaky, have high temperatures and become a bit nauseous… not ideal in a new relationship!! Thankfully, since being off all the medication for about six months now, everything seems to be back to normal.

There have been ups and down whilst on his treatment.  Especially when you think you’re getting better, and all the test results show that—but when you turn up for an appointment you find out you’re right back at the beginning again. I cried in the Whittington Hospital car park a fair few times!

 

My treatment has been a huge success!

I genuinely believe without the Prof I would have been in and out of hospital for all of these years. His treatment can be viewed as “out there” by other medical professionals, but for me it has been a success. Unfortunately, this illness is still misunderstood and bloody stubborn, but I hope everyone can remain patient and we should all get there in the end.

 

 

A Mum’s Perspective

Alison’s mum shares her frightening experience of living through her daughter’s struggle with a chronic UTI that made her gravely ill, and left the entire family fearful of what was to come in the future.

New Year’s Eve, 2013, and so it begins…

The phone rings. I’m surprised to hear my 24-year-old daughter’s voice, as she’s in Dublin with friends, to see the New Year in.

My heart sinks as I realise all is not well. In fact, she’s crying (rare). ‘Unable to lift her head’ and is bathed in sweat. As I pry a little more, suspecting that the partying has gone too far, I realise it’s not the normal festive hangover. She says there’s no way she can go out that night and would prefer to stay in the hostel! Clearly this is serious. I’m not unduly concerned as a nurse or a mother. I advise her to see a doctor if paracetamol and rest don’t help. She returns to London the next day, gradually recovers and carries on with her hectic professional and social life. I feel comfortable.

Within a few weeks, another phone call, the symptoms are back. Now I have a little alarm bell ringing. Why is my very healthy daughter (who’s never needed treatment in her life), suddenly experiencing recurring symptoms? I suppress any fears by justifying it. As a family, we have a party gene, so I feel sure she’s simply burning the candle at both ends. The doctor gives her antibiotics and I try to feed her comfort food and let her rest. However, the severity of symptoms doesn’t add up. She’s soon happy to go back to London with my nagging ringing in her ears: ‘Don’t drink for a while. Stay in and give yourself a chance to fully recover’ etc etc. I feel concern.

Why is my very healthy daughter (who’s never needed treatment in her life), suddenly experiencing recurring symptoms?

 

After the first few infections our roller coaster ride really takes off

Yes, it’s another dreaded phone call. This time it’s my daughter-in-law who’s meeting Alison in London. As she comes out the tube station there’s a crowd, paramedics and an ambulance. It’s Alison, who’s collapsed. After checking her out, the medics are happy for her to go home. She sees her GP who diagnoses a UTI and gives her more antibiotics.

At this point, I want my daughter back home so I can look after her and try to understand what’s happening. The little alarm bell is getting louder. She’s my child and I’m frightened because my gut is telling me something’s weird about this. Alison doesn’t want to come home.  As an independent young woman, I have no choice but to respect her wishes. I could throttle her!  I feel nervous and slightly out of control.

It’s now July 2014 and you’ve guessed, the phone rings. It’s a feeble, sobbing Alison who can’t even get out of bed. I get on a train to London, take one look at her and order a cab to take us to hospital. As we wait to be seen, she’s visibly deteriorating: sweating profusely, burning alive, her heart’s racing and she is totally lethargic. Once seen and investigated, she quickly responds to IV antibiotics and is discharged. She comes back to the family home but as soon as she’s well enough, she’s back to the madness of her London life. I’m still convinced this plays its part, but I can’t convince Alison. I feel scared that there is something sinister underlying.

 

Trapped in a petrifying nightmare of hospital admissions, sepsis and fear for the future

It’s the 22^nd December, so the party life is at full pelt. The next phone call horrifies me. In fact, when I see her name appear, I am properly scared. It’s back and she’s sick. Once again, we get to hospital as quickly as we can. It’s chaos but they work as quickly as they can because of her history. Despite this, the IV antibiotics aren’t working, so they introduce more but they fail to stop her developing sepsis. I am really, really petrified.

Thankfully she responds and is discharged back to us, at home, where she makes a good recovery. The consultants are booking all sorts of invasive investigations. I am convinced this isn’t a good thing. Why would a physical abnormality suddenly manifest itself now? I feel trapped in a system.

Much to my horror, just three or four weeks after the episode, Alison informs me she’s going skiing in France. I literally beg her not to go, but she assures me she’s going to lounge about in the chalet, whilst her group of nutty (but lovely) friends go crazy. I am seriously unhappy, but my pleas fall on deaf ears. I can’t decide if I’m more livid or frightened at this girl’s antics! It’s probably 50/50. I feel livid and frightened.

Another phone call. My heart sinks. This time it’s Alison’s best friend from France, clearly concerned at the sudden change in her pal’s health. I ask her to get her to a doctor with her discharge letters, whilst I look for a flight to get her back home. Alison’s under strict instructions to tell no one at the airport that she’s ill or they won’t let her on the flight. Every bone in my body is screaming at me to get her back. The fact that her symptoms accelerate with each episode isn’t lost on me. I feel sheer panic.

I’m in tears, frantic with worry about my sick child travelling home alone, but it’s the last seat on the plane, so there is no choice. My husband’s working abroad so feels helpless. My eldest son realises the seriousness of the situation and insists on leaving work to do the driving. I phone work to tell them I’m going to Heathrow as Alison is ill again.

It’s back and she’s sick. Once again, we get to hospital as quickly as we can. It’s chaos but they work as quickly as they can because of her history. Despite this, the IV antibiotics aren’t working, so they introduce more but they fail to stop her developing sepsis.

 

Finally, a specialist who understood the cause of my daughter’s increasingly grave condition

My phone rings before I leave home. It’s a colleague who’s married to a GP. She gives me the e-mail address of a consultant in London her husband has read about, Professor James Malone-Lee. I quickly email Professor Malone-Lee, giving a brief history and then I rush to get ready. When I’m on my way out the door, I quickly check my e-mail and am aghast to see a response! He reassures me that following this acute episode, The Prof (a term of endearment now) is happy to see my daughter and feels he will be able to help. The relief is unbelievable, although I know we must deal with what’s right in front of us now.  I am really frightened but a little bit optimistic.

A very sick girl arrives at Heathrow and we go straight to hospital. I plead with triage to get her seen quickly because of her history. I have no complaints as everyone did their best, however Alison deteriorates rapidly. As a family, we are paralysed with fear.

How could this fun loving, gorgeous, bundle of health suddenly be in such a serious medical condition again? She gradually recovers and is discharged with the promise of appointments for several intrusive investigations. I am glad we have another option.

We prioritise an appointment with The Prof. Throughout our first consultation, we are reassured by his knowledge, wonderful manner, optimism, confidence and treatment. I feel relieved, cared for and hopeful.

I quickly email Professor James Malone Lee, giving a brief history and then I rush to get ready. When I’m on my way out the door, I quickly check my e-mail and am aghast to see a response!

 

The treatment worked and our nightmare is now over!

October 2018, four years later, and another phone call. Alison’s crying.  ‘Mum, The Prof’s taken me off all treatment.’  Tears of Joy! It worked! I feel ecstatic and overwhelmingly grateful.

 

 

 

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