Success with water

[helen3068]

Hi everyone. Five months ago I came across Karen Nielsen’s post and was particularly interested in her story of how she turned her IC symptoms around by drinking heaps of water and holding on for as long as possible. I’d already discovered that if I was in a bad flare, I could lessen the pain by drinking a lot, but I’d never considered drinking the sorts of quantities she was talking about (2.5 gallons a day). Inspired by her post I’ve been consistently drinking lots of water (aiming for, but not always reaching 9 litres daily i.e 2.4 gallons US - we work in metric over here). For the first couple of months I got considerable improvement in terms of pain relief. But was still having to get up at least every hour during the night. A bad flare in Feb send me back to the drawing board. It was on rereading Karen’s advice that I realised I was ignoring a crucial part of her advice: she talks not only of drinking lots of water but of holding it for as long as humanly possible. I’d somehow discounted this part of the strategy – telling myself I didn’t really have a problem with bladder capacity, just with pain. So for the past 5 weeks I’ve really worked on the ‘holding’ aspect at least during waking hours, often emptying 1 – 1.3 litres at a time (2.1 - 2.7 pints US) And the great thing is I now only get up around 3 times a night (instead of around 8 times). I never used to sleep 3 hours uninterrupted – now it happens quite often. Before I tried this ‘radical bladder retraining’ – I’d usually be lying in bed having just emtied my bladder but still in considerable pain. That rarely happens anymore. I’d have to say this is the most improvement I’ve had from any treatment I’ve tried, and I’m still confident of further improvement – Karen says it took her years to be as well off as she is today.
By the way, I’m 40 and have had IC for around 17 years. Previous treatments I’ve tried include DMSO, Elmiron (only for 4 months admittedly), Amytriptiline (75mg a night for several years), TENS, Ditropan. And have also dabbled in Chinese medicine, acupuncture, homeopathy, cranberry tablets etc – all with no or very limited success. I really would encourage anyone with similar symptoms (pain and frequency, particularly overnight) to give this a go. It’s free! Sure, the ‘holding on’ becomes uncomfortable but I don’t mind a bit of short-term suffering if I know the effect is to have a more comfortable bladder overall – the best part for me is getting a better night’s sleep. Hope this helps someone!

[Dixiefireball]

:welcome: to the icn family. i'm glad you found something that works for you. please keep us updated on how you are
sending you hugs and prayers
Rhonda:butterfly

[fireflicker285]

I always found and was always told .... that to hold your urine in can make a flare worse or if you are not in a flare, can put you in one.
I guess if the urine is that dilute though.....maybe it doesn't?

Certainly worth a try. I know my bladder capacity shrinks year by year.
Holding it in is so hard though!

Hummmm.

:rolleyes:

[Iris]

Hi, regarding your post about the water intake, and holding. The last time I had my check up with my Nurse practitioner, who along with my Urologist are taking wonderful care of me, we discussed bladder retraining. She suggested just trying to hold a little longer, even like 5 minutes, then 10, and so on. Not to let it be uncomfortable for me, and to keep a note of how often I went and see if it improves any. I must admit, I have been doing that gradually and have seen some improvement myself. I drink a little more water than I used to also, so it was interesting to read your post. I am still on all my meds as well, but it is nice to be able to get a little more extended time between bathroom runs when I am out, or at night. Thanks for posting , hugs Iris.:hi: :thumbsup: :woohoo:

[helen3068]

Thanks for your replies.
Tracey, yes I used to think the same as you - I know bladder retraining was suggested to me at one stage by a specialist or physio and I was convinced that holding urine would just further irritate my inflamed bladder. I tried the mild form of bladder retraining they were suggesting but it didn't seem to make any difference.
Now I'm thinking: my IC started with a series of UTI's in my early 20's. Maybe I just got used to emptying my bladder too frequently and this resulted in oversensitised nerve endings. Maybe it's different for others with more clearcut damage to the bladder lining. (Specialists doing my cystoscopy seemed to disagree about whether I had visible damage to the lining of my bladder). Or, as you say it might help that the urine is super dilute.

Iris, Good that you have seen some improvement. I guess I was inspired by Karen Nielsen's success and was too impatient to go the gradual way. Where possible I hold on for as long as I possible can (not at night when I'm trying to sleep though - that's too hard!) I got noticably less pain within a week and by 2 weeks I was getting up half the number of times as previously.

Anyhow I'll keep you updated as to whether I continue to improve. I'm just grateful to finally have some freedom from pain!

Keep well all of you.

Helen

[ICNDonna]

You can read about bladder retraining in the Patient Handbook at http://www.ic-network.com/handbook/

Most specialists suggest this not be tried when in pain. I do suggest that anyone considering this discuss it with a physician first.

I'm glad something is working for you. Thank you for sharing.

Donna

[Sharon]

While I have learned that increasing my water intake, and practicing bladder control has helped me alot, I do want to mention that drinking an extremely excessive amount of water can be dangerous for some. I believe one of the things it does is lower the concentration of sodium in the blood. Now, I don't know how much is an excessive amount, but maybe some of the nurses on the board can chime in on this discussion.

Sharon

[helen3068]

Re bladder retraining and pain: It is true that I didn't embark on this strategy whilst in the middle of a flare. But probably like many IC patients, I tended to always have an uncomfortable bladder and if I'd let that stop me from trying this strategy - I'd never have been able to retrain my bladder. It worked for me but no doubt its not suitable in all cases.

Good point Sharon about having to be careful with electrolyte/salt loss when drinking lots of plain water. It can apparently be dangerous. I know the first couple of mornings on this regime, I tried to drink too much too quickly and ended up feeling really peculiar and light-headed, and later vomited. After that I spread my water intake more evenly throughout the day and night and had no problems. I subsequently asked my doctor if drinking 9 - 10 litres of water a day could give me electrolyte problems: she said that if I'm feeling OK then it shouldn't be a problem. So I guess I'd say to anyone - if you start feeling at all peculiar, don't drink anymore until you feel OK. You can also drink gatorade to replace salts/ electrolytes. Apparently you can get your levels tested, but I've not done this myself.

regards, Helen