Hi everyone,
I am at the end of my tether have had problems with my bladder not working properly for sometime I have to self catheterize but have had persistent ecoli infection in my bladder for 6 months antibiotics not stopping it i feel ill every day as well well as the pain of the other conditions does anyone else suffer with this.
Hello Julie1234, I feel sorry for you, I suffer from the same problem, my bladder would not empty properly, and quite often would not work at all, requiring me to self catheterise. This is not always easy ,especially when in public toilets with all your outer clothes on, and at night when you are half asleep. I ended up with a supra pubic catheter, which didn't help as it leaks from the hole in my abdomen , dribbling most of the time, so I have to have incontinence pads around my abdomen.
The only thing that helped was a referral to immunology, who found my B cells were very low due to Rituximab. I now have 3 weeklly infusions of Immunoglobulins, and
that helps. I have not had so many infections.
Perhaps you could ask for a referral. I hope you get some help as this problem can make you feel very unwell, best wishes. and a better new year.
Hello teapot. This is tough to manage. You sound very experienced & brave. I hope Julie won't mind if I summarise my case, hoping you'll comment...maybe Julie can find something in my tale useful:
I'm 62 and I have been managing severe rapid onset complex persistent UTIs with pyelonephritis and multisystem symptomatology for decades under the care of my NHS GPs
It's only since my infant onset lupus diagnosis was recovered 5 years ago that I've finally been thoroughly investigated by urology....I was only referred to urology this year! (Go figure!). Although I have had full on gyn/urology physio pelvic floor traing etc etc. Anyway, apparently my bladder does function ok, so no catheterisation to date, but my sjogrens + ehlers danlos hypermobility + DES daughter birth defects mean my plumbing equipment is fragile and prone to both bacterial & abacterial problems (actual infection as well as interstitial cystitis & urethral syndrome/abacterial cystitis...all running together in my case).
Plus this year rheumatology referred me to immunology where investigations discovered I also have an early onset immunodeficiency which existed prior to when my daily lupus etc immunosuppression treatment began 5 years ago (hydroxy + myco + pred).
So far this year Immunology has identified the primary B & T cells problems involved in my case, and are refining these observations via further vaccination (pneumovax already, and ASAP prevnar). Basically, we know now that I have long term hypogammaglobulinaemia + lymphopenia. My infection treatment plan is to keep emergency high dose long course antibiotics at home, and to submit samples to the lab before commencing antibiotics. I'm told that patients with my immunological profile are especially prone to respiratory infections..and there is great concern that I so far have 0 pneumonia antibodies, and have made none in response to being given the pneumovax 23 vaccine last summer. This fact alone means immunology thinks I have a PID (primary immunodeficiency), so investigations to identify this more closely continue in my case
At my 3rd immunology clinic appt this Autumn, the consultant asserted that to date immunology research hasn't confirmed any connection between urological & renal infections and immunodeficiencies. He said not enough research has been done to make it possible for any expert to say there is a direct correlation between immunodeficiencies and these specific types of infection and also that IV immunoglobulin treatment doesn't help prevent complex persistent urological infections. Since then I've met several immunology patients who have found IV Ig treatment has indeed prevented urological infections. And now I think you're finding this too,big I've understood your reply correctly. So, I'm curious: how has immunology explained the decrease in your urological infections during your IV Ig treatment?
I'm fighting another UIT + pyelonephritis right now: thanks, Santa, for the early Christmas present....this infection was suspected 2 weeks ago, but samples only tested pos yesterday...when I did my home urinalysis strip test and submitted a pot for lab analysis before starting to take tabs from my home pack of co-amoxiclav. As soon as I get over this infection, I'm to have the prevnar 13 vacc and then 4 weeks later be tested to see if I've made any antibodies. My understanding is that I'll only get IV Ig treatment once my particular immunodeficiencies are more thoroughly understood...but if my respiratory infections were to increase, then IV Ig treatment would be given
Wishing you all the very best
🎄🍀 coco
Hello Barnclown, happy christmas.
My antibodies were almost absent from the Rituximab infusion, mine were 2 (normal levels 5-16) and I was told that I will have to have 3 weekly IVIG infusions for ever,as my body will not replace them.
So I think my infusions were a rescue plan. I have also had a constant dry cough/ falling oxygen levels for 6 years, I have a chest flare and a UTI going on now, although it is borderline infection so by the time I send another sample in it's usually got a hold on me!
My chest has improved also since starting treatment and 2 months of Clairithromycin. I think the IVIG is supporting my immune system and helping with some defence.
In reply to Julie 1234, I don't have a diverticulum, but my bladder has raised inflammatory areas which can get quite sore,hope you get things sorted soon, It's an interesting topic if this treatment can help. best wishes to everyone.
Thanks so much teapot. Those treatment plan details make sense to me. Hope your festive season is a happy one. Wishing you all the best for 2016 🍀
Hello Julie...am very much feeling for you. And I like the advice teapot has given.
Despite a lifetime of intensively & conscientiously lifestyle managing my predisposition to these sort of infections + adhering to the treatment offered by my GPs over the decades, I'm still highly prone these infections. And coliform bacteria are usually involved in my infections
I guess you're under care at a urology clinic & that they've tried prophylactic antibiotics eg nitrofurantoin?
My feeling is also that maybe you need to see immunology, and that possibly so far your courses of antibiotics haven't been high enough dose or long enough course. I'm now on 625mg co amoxiclav for minimum 2 weeks, what are you taking?
I've posted my story in a reply to teapot...hope something in it can be useful to you
Glad you posted..I'll be following this discussion with great interest
Am wishing you every possible best wish...hope you beat this infection very soon
🎄🍀 coco
Thanks for your input teapot65 and barnclown, I have now found out that the nice urologist that was seeing me has left so i am stuck with my old one who is not very easy to talk to so i dont know what i will do now probably be shoved to the bottom of the pile as per usual, will be seeing my gp tomorrow and will be taking in new sample which i know is still infected because i have tested it myself and it is still the same guess i will just live like this also does either of you have a diverticulitum pouch that has formed of your bladder.
x
No, I don't sorry. Hang in there Julie...good plan to see your GP right away...could your GP refer you to another urology dept for a fresh view of your situation? XO
Hi Barnclown and teapot65 I know it has been awhile on this paticular post but finally have an appointment for a cystoscopy the doctor after lots of ringing on my part and tears of frustration, rang me personally apologizing as i had been lost in translation. He said even with thr risk of further infection being high it should have been done months ago, i will need to stay in for two days for iv antibiotics but i don't care about that thanks for your support.
julie x
good! well done! 👍👏please let us know how things go
xoxo🍀
Hi barnclown and teapot65 have had my cystoscopy and oh what a sight my poor bladder is in there were dark red angry blisters everywhere no wonder i had been suffering anyway dr says that it is caused by my body attacking itself so my rheumy was wrong there course of action i will have to instill a special antibiotic gel to coat my bladder every day to try to protect from further damage. And so we fight on thanks for your kind support and for listening. x
Fibro & Lupus
Fibro or lupus
Breastfeeding with Lupus and Sjogrens 
My story, Sjogrens?
Sjogrens
