Registered: 1488204862 Posts: 1
Reply with quote #1
I am new to this forum, so I wanted to say hello and see if anybody had any much needed words of advice.
I had my first bladder infection of my life (in my late 20's) in the winter of 2014. There was no explanation for why it was so bad - never had one before, wasn't sexually active at that time etc. From then on, I had a bladder infection roughly every month (when I was given a weeks course of antibiotics by my GP) and never felt 'normal' in between - I would always have twinges/stings. I went through all the usual routes with the NHS and had a cystoscopy summer 2015, which showed minimal glomerulation. The only remaining recommendation from the NHS was to have bladder installations. However, I didn't want to do that. I felt it was too invasive and the success rate wasn't great, and I was told that, ironically, one of the main risks was bladder infections!
I then found Dr A in the autumn of 2015 and was put on daily Nitrofurantoin (100mg x 2 per day), Hiprex, Cetirizine, Ranitadine, oil of oregano, D-mannose.
Taking the antiobitcs and medication, I am 75% symptom free. Which is obviously better than having a horrendous bladder infection every month, but I am now in the position where I have been on long term antibiotics for 18 months, and my symptoms are no different.
The only option seems to be to come off antibiotics again and re-culture. However, every time I do that, I get a horrific infection after only 2 days off medication (it is e-coli and enteroccocus) which takes me out of life/work for at least 3 days while the antibiotics do their job. And if I can get an infection so quickly after stopping antibiotics, they clearly aren't working or healing my bladder!
My immune system has gone down the toilet - I get knocked down by viruses, have a lot of stomach upsets, and have had quite a few bad bartholins cysts. This condition is ruining my career and my life. I am completely at the end of my tether, and I don't know what to do. At this stage, I am willing to try anything.
Has anybody been in a similar situation who has managed to come off antibiotics and sustain? Is there any more natural things I can be taking? All suggestions welcome!
Registered: 1323861157 Posts: 1,635
Reply with quote #2
Welcome to our Forum and hope you will find much to assist you on your journey with this dreadful did-ease. As I am sure you are aware, we are so different that there is no one remedy to assist everyone, and it is only by talking and sharing we can help each other. I am sorry that no one has yet replied but in the meantime may I ask you to contact the BH Office number above, and maybe consider becoming a Member as I am sure they will be able to offer you so much more advise and support, including a joining pack full of extra info. Are you still under Dr A? and what are her suggestions? A few suggestions increase your Probiotics and re check your diet, also make a diary and try and work out anything that maybe be triggering, have you increased activity, i.e cycling, swimming,even sexual intercourse, could these be a factor. It is unfortunately an on going situation to bring it under control but as you will see from this Forum there are many suggestions to help and here is Chrissys success story http://cobf.websitetoolbox.com/post/things-are-getting-better-7939418?trail=15#1 Hope this may help, but do please keep posting Kind regards Kate __________________
Registered: 1287566971 Posts: 4
Reply with quote #3
Sounds like a lot of meds, sort of, throw everything at it and hope for the best. Hiprex is a great one for me, the only thing which works long term, without the additional antibiotic, and I consider myself fairly 'experienced' (40 years of cystitis and every remedy/doctor tried). It was literally that or die. If used correctly it is not usually prescribed with an antibiotic. To render it efficient, ie. to activate the Hiprex, the urine must be completely acidic. For this reason I avoid alkaline foods etc, orange juice (yes, this creates an alkaline ash) etc. Inform yourself on these foods. I have never taken Ranitidine, but think it may reverse the acidic nature of your urine, as it is a digestive antacid, and renders the Hiprex useless. You will find the paraplegic forums useful for info on this drug, as it was originally used for those in a wheelchair, with in-dwelling catheters and chronic bladder infections.
I personally would not use all the other stuff all at the same time, (oil of oregano, uva ursi all those things, are 'natural' and if you so desire, deserve a trial, but not maybe when you are so sick) but that is my opinion only. D-mannose did not work for me. I have however, heard of nitro used in conjunction with Hiprex.
Registered: 1323630517 Posts: 971
Reply with quote #4
Have you discussed your concerns about your immune system/general health with your Dr and Dr A? If it were me I would ask my Dr to carry out some blood tests to check the function/levels (full blood count, B12, Folate, thyroid, iron, etc)
I have went through a period of constantly going down with viral infections and just feeling so ill. My B12 and Folate levels was checked and it was discovered my levels were very low and this impacted upon my general health. My Dr prescribed a course of B12 injections and folate medication.
This really helped my general health levels and for a while I felt better and my health stabilised.
However after a couple of years I noticed my health declined again, I was constantly suffering from colds, coughs, sickness/tummy bugs etc. My Dr ordered some blood tests and it was discovered that my thyroid levels were highly abnormal and I was diagnosed with Hypothyroidism (under active thyroid). I started thyroid replacement medication in November 2016. After a couple of months I noticed that my health was improving and my enters levels were slow increasing. We are still adjusting my thyroid medication levels but things are a lot better than they have ever been.
Before being diagnosed with Hypothyroidism I had no clue how impactove this condition could be - especially on the bladder. There is a lot of medical research that shows hypothyroidism can negatively impact upon the bladder - people with thyroid problems are more predisposed to urinary infections.
I hope this is helpful - please let us know how you get on xx __________________ Bladder Health U.K. Forum Message Board Moderator. Kent Support Group Co-Ordinator Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent. Please support Bladder Health UK by become a Bladder Health UK member - click here for more details: http://bladderhealthuk.org/membership
Registered: 1247569761 Posts: 991
Reply with quote #5
I have just read your post and as you mention that infection was troublesome once a month, I am wondering whether hormones may by playing a part in your illness. Has Dr A suggested a change to your antibiotic regime at all if things are not clearing with the present regime? I am on the advice line tomorrow (0121-702-0820) if you would like to give me a call to discuss your situation further. Susannah __________________ for Bladder Health UK
Registered: 1468144890 Posts: 36
Reply with quote #6
So many here have heart-wrenching stories Anna but yours pulled at my heartstrings. I feel incredibly sorry for you - you are too young to be going through this appalling situation. UTIs are life-changing and more often than not life-limiting. But no matter the cause of ones bladder problems, UTIs, or other conditions, they ruin lives. My condition means I cannot leave my house and that is a life-changing situation too!! I can't add to the advice you've been given here as my situation is quite different from yours. I've been told that self-caterisation is the 'way to go'.
It's all taken two years to diagnose my particular circumstances and i I've still not yet seen the nurses who will teach me. However, I'm definitely wondering if this will be a good line of action in the long run since UTIs seem to go hand in hand with self-catheterisation...