The COB Foundation

Curing your IC the natural way

RiaChantler — Sat, 21 Nov 2009 07:39:28 GMT

Hello everybody

My name is Ria. I wanted to share my experiences of getting well from IC to a point where I now successfully manage my illness.

I have had my condition for 5 years now...I don't seem like a veteran of the disease but 5 years seems a life time when you are constantly in pain. My IC started when I lost my Mum suddenly from cancer and kept getting persistant UTI's. Long term anti-biotics sealed the deal for IC.

Anyway, the good bit...I have done much research and study into nutrition and long story short, my journey lead me to discover a book by Erica White, Beat Candida. I have been on the candida diet now for 3 months. The results are astounding. The idea behind this diet is bacteria starvation of candida. I decided to take my health into my own hands as doctors could not help me. I turned my perspective of IC around. It is said to be incurable...which is true from the medical point of view as no magic pill has been made to rid us of it. Drugs cannot reach the pain because the layer of the bladder that is infected is the 'interstitial' layer. This is the spongey layer between the inner wall and outer muscle. The reason it doesn't respond to oral pain killers/anti-biotics is that it is one of the few parts of the body that has no blood flow. However, bacteria can colonise and inhabit these areas and we feed them quite nicely...with sugar.

However, IC is curable, through nutrition. I decided after having such relief I would travel to the USA to see Dr Matia Brizman, a hollistic doctor with a 100% cure rate of this disease, who herself suffered with it for many years. Again, this program is dietry. 5 of my IC friends from the UK have embarked on her program, which isn't as costly as you think, and are successfully recovering. The diet is hard, as no yeast or sugar is allowed...that means no fructose or natural sugars either. Once you get into the swing of it, it isn't so bad....and when the cravings kick in you have to tell yourself that is the bacteria screaming out for sugar to survive. Well sod them because i'm not giving in!

It is only after the 'die off' period that supplements are gradually introduced. I see many sad posts on another forum of IC sufferers pumping themselves with marshmallow root tea, colostrum, cysta - q ect ect who feel terrible. The reason being the liver goes into detox over drive and on a weak body that isn't good at all, as the dying bacteria leech out so many toxins it actually worsens the condition before feeling better. I had my last 'die off' episode 2 weeks ago. I had headaches, bladder pain and felt foggy and fluey. I kept soldiering on because I knew that was a sign I was winning. Today I feel absolutely fantastic. I am alert, no pain, and the diet has even got rid of my IBS as well.

Another interesting thing is that my best friend is doing the diet as well, and she suffers from M.E. (chronic fatigue syndrome). She lost her job 5 years ago and was bed ridden. She also had an allergy to everything. She embarked on this diet with me and I am chuffed to see the improvement. For those of you with allergies to food, candida does burrow though the gut wall when over run. This burrowing means that tiny holes appear in the gut wall (known as leaky gut) and food particles are prone to escaping. Your immune system then ends up doing it's job so well it attacks itself, as the food then becomes an intruder and your bodies defence is to build an 'allergic reaction'. Hence then you cannot eat certain things!

Anyway...that's enough for my first post. I really hope I do get some interest because help is out there...but you do need to be brave and be responsible for your own wellbeing. The world is a lazy place with people expecting a cure from someone else with a miracle pill. It won't happen. If you work hard and have faith, not only can you recover as well as I have, you can also get rid of other illnesses that you also suffer from. I sincerely hope more people take this route.
Here are some links for you all:

http://www.beatcandidapack.com/

http://www.icaroadtorecovery.com/

Love and light to you all
Ria x

Forum: Interstitial Cystitis

Atarax

Lizhalekirby — Fri, 20 Nov 2009 18:23:06 GMT

I have been in the full flow of a flare up.I was doing really well having acupuncture ,to the point where i was nearly off all my meds and sympton free.Its been six weeks now,and all i seem to do is CRY.Because nothing is working and i am on the toilet constantly.I wanted to know if anyone has ever tried the antihistamine ATARAX.Their is quite a lot of info on it when you google it.It apparently is used for IC.It is an antihistamine,and when i try over the counter antihistamines they do ease my symptons.If anyone has,then please write to me at lizthomson4@googlemail.com.

Forum: Interstitial Cystitis

Having a rant, been in flare for a month!

Donna_W — Thur, 19 Nov 2009 13:10:33 GMT

Sorry, but I'm going to have a rant, have been in flare for a month, and been stuck at home for 2 weeks. I've just moved house (so expected a flare really) but I'm all settled in now and it's not going away! Went to get tramadol yesterday instead of my usual co-proxamol, but it's not helping AT ALL!

The only thing I can think of is that it may be the contraceptive pill. I've been on Overette for about 7 weeks. I noticed a slight worsening of symptoms when I started, but I attributed that to my stressful job (which I've now left thank goodness) and preparing to move house.

Going to stop taking it from today. Has anyone else had problems with the pill? Does a pill exist that doesn't excecerbate IC symptoms? The other half is just going to have to go for a snip I thinks , it's his turn to be uncomfortable!

Hope flare ends soon, as facebook and daytime TV is getting really boring really fast!

Forum: Interstitial Cystitis

ADVICE NEEDED!!!

yanoula — Thur, 19 Nov 2009 09:23:16 GMT

Hi - I've been on here a few time as 3 doctors have all said they think I have IC as urine samples dating back over past 5months show some RBC, sometimes smll protein always WBC but never bacteria, also some mild period type pain, sharp pains in groin, sometimes excessive urination, very low back/sacrum pain (not sure if it's associated or not), sickness tiredness. I do have a history of kidney problems, hydronephrosis and pylenephritis and cystitis and I currently have mild hydronephrosis. I've been seeing a urologist for a cpl of months who has done cystocopy, xrays, scans and on 23/11 will be going for a radiation scan to ensure everything is working properly. My problem is he has said that if this test is ok he thinks I have an infection and will prescribe long term medication, (done all this years ago when prescribed a year of anti biotics, did 6months but caught everythink else under the sun). How can I have an infection and be treated for one if none is showing up? he says IC does not show WBC in urine, docs all thought IC BECAUSE WBC in urine with no bacteria???!!! Really really confused, has anyone any advice, I don't want to say to Urologist that he may be wrong!!!!!!

Forum: Interstitial Cystitis

Dr said OAB but nomeds work PLEASE HELP!!!

princessrackel — Wed, 18 Nov 2009 17:03:33 GMT

Hi! Im 25 yrs old and female. I went to the hospital in June and July both saying I had a UTI and they gave me an antibiotic. Didnt work. Went to a gyno who said I had ICS and referred me to a Urologist who Ive been seeing since July. He has tried everything from Gelnique, Enablex, detrol, vesicare, and probably a few more I cant remember and Im now on Sanctura. They dont work. IF they do its for a few days and then they stop. He did the scope and he said that I just have irritation nothing else. He did a cocktail where they put steriods and other meds into a cathader. Once I peed all that out I was in the worst pain in my life. So he said I must be allergic to something that was in there. Funny thing is Im not allergic to anything. The only test he has done is the scope, check my urine and to see if I can empty my bladder(which thank god I can and thats not a problem). Is that normal? Should he be doing more tests? He said that I must have OAB and will not think I have ICS until years down the road. That hes never seen a case like this. I have no clue what to do. This is making me sick. I have to pee all the time, push to pee, I have cramps, backache, nausues and it just seems to keep getting worse. Can someone please help me?

Forum: Overactive Bladder Syndrome

Female urinary devices

hellofromfio — Wed, 18 Nov 2009 16:15:44 GMT

Hi All

I thought that I would share my experience of female urinary devices with you all and ask for anyone else's findings! Maybe you have tried, but for me it has been an interesting time to date!!!

I bought a Uriwell first (I thought the children's version with a frog head was the cuter - so I got this one) and to be honest have mastered the art of using this while my hubby drives. I just shift forward in the seat and push into place(keeing my seat belt on). It has meant that I can go every few minutes during a long distance drive, but still get somewhere other than staying at home all the time! I put old towels under me on the seat in case of drips and pour it into a huge carton by my feet to empty once used..... I have a washable blanket to keep over my knee for privacy.
This has proved really useful when even my hubby was desperate and had to pull over the road side and use it!!!
I wanted then to get a device to allow me to 'stand and wee like a man' after going on a 'rural' walk (where my hubby assured me no one would see me squat by a wall) and a couple appeared as I was there with my trousers around my ankles.... I managed to pull up my trousers and wee all over them!!! ha ha - funny after the event but not at the time... it took a long time to dry out!
I bought the She Wee and the Whizz Extreme. I have been practising these are home (it feels weird standing up to wee and now I can sympathise with men weeing on the floor around the loo!!). The Whizz Extreme is very soft and you can press against you (it has a wider opening), but with both I have managed to wee on my underwear..... The She Wee has a small opening, so takes a lot of matering to wee into and not have it overflow. I kept a large nighttime sanitary towel in my underwear to catch drips from them.

Here's to practise making perfect.

I personally have found being able to wee while my hubby drives a truly liberating thing, as I felt house bound before as I could suddenly need the loo at any time.

They advertise that you can use these around town, but I have only used them within our own car or by a bush in the countryside so far.

I would like to hear anyone else's solutions to being able to go anytime, anywhere.

I saw those absorbant bag things - has anyone tried?

Fio
xx

Forum: Interstitial Cystitis

What tablets are good for IBS when you have IC?

hellofromfio — Wed, 18 Nov 2009 15:56:59 GMT

Hi All

Can I pick your brains?

I used to have IBS, but for a few years I have not had to take meds as it calmed somewhat....

After a recent bad flare of my IC, I seem to have my IBS back as well with a vengeance. When I previously had IBS, I did not have constant IC pain (I only had occasional BC) and my meds were some tablets to take with food called ? mebeverine (or something like that) - is there any meds which are good for IBS but will not impact my IC? I could not bear to have my IC made worse.

IBS-wise I am getting bloating, some diarrhoea, nausia (can be very bad) and abdominal pain.

Any comments appreciated.

Fio
x

Forum: Interstitial Cystitis

Chrondroitin update

alisonc — Wed, 18 Nov 2009 12:26:34 GMT

Hi All

Not posted for a while so just thought i would let you have an update on the Chrondroitin installs.

Ive had 6 (over 6 weeks) and have certainly noticed an improvement - mainly with the constant pressure i had day and night. This has certainly eased to occasional very mild pressure, where as before it was heavy pressure 24/7. Its made such a difference to my life........

However, its not helped at night, my bladder kicks in as soon as i lay down for some reason, and its not stopped flare ups, but ive only had one in the last few months, and it was every other week before!!! Its also done nothing for frequency, though i dont suffer urgency.

The only problem ive had is i was having a flare when i had my last one, which resulted in a really bad water infection a few days after (i dont normally suffer infections!) With hindsight, i dont think i should have had it done whilst having a bad flare.

I would say my quality of life has improved with these installations by 30%, which to me is alot, compared to how i was before. I start again tommorrow for 3 weekly top ups, so theres more chance for improvement yet.

This is the only treatment that has helped. I know im never going to be cured whatever i have, but its a start. If anyone suffers constant heavy pressure as part of their symptoms, i would recommend Chrondroitin installs, i was at the end of my tether before i started this. It does take about 4 installs to notice a difference!!

I will keep posting after each top up!!

Alison

Forum: Interstitial Cystitis

Living in hell lookin for info for Elmiron

EricaSmith — Wed, 18 Nov 2009 09:49:23 GMT

Hey everyone,

I hope this post finds you all in some sort of comfort.

I'm totally at my wits end......i've been in a constant flare up for about a year now!!! I have the odd couple of days when days are a bit better and symptoms aren't to bad. ( i have constant pressure and never feel empty, totally exhausting!! and horrible urethral burning)

My consultant has agreed to give me a six month trial of Elmiron but the problem is iv'e now been waiting on the list for the best part of 4 mths!!
The hospital are having a real problem getting it. It is usually sent to the Victoria hospital in Glasgow, but i think there is a problem getting it again!! and have been told i could be waiting until next year before i get it!!! Arghhhhhh!

Am i barking up the wrong tree here? and putting all my hopes on a pill that's not going to help?

Please if anyone is on Elmiron i would love to hear from you and hear your story.

I'm currently on Hydroxyzine 50mg daily and having cystistat instillitions as and when i require them.....(it's not helping) i isc aswell (which helps) and i take diazipam when i'm tearing my hair out (which is a godsend at the moment)

Hope to hear from some of you soon.

Best wishes.

Erica @ her wits end!

Forum: Interstitial Cystitis

aromatherapy massage

Lizhalekirby — Tue, 17 Nov 2009 20:01:10 GMT

I want to let people know that if they have IC they need to be aware that aromatherapy massage can be the cause of a flare up.I recently had this happen to me.I had been having very successful acupuncture from a lady who specialises in IC.I was almost at the point of coming off all of my medication and was nearly sympton free.I had gone away with some friends to spain and whilst we were on the beach.some thai girls were offering reflexology foot massage.I had one each day for three days,and noticed that my symptons were returning.When i went for my appointment with my acupuncturist i was in a full flare up.She explained that IC patients should not have massages with essential oils as it causes the bladder to react by flaring up.Six weeks later and i my bladder is just starting to calm down,thanks to the chinese acupuncture.I wanted to let others know to avoid the same experience.On the plus side, the acupuncture has been a godsend.

Forum: Interstitial Cystitis

My liver!!

Mazzie — Sun, 15 Nov 2009 22:14:06 GMT

Hi I am a bit shocked because I had a routine Liver Function Test this week and it came back abnormal in the extreme! I have been drinking Marshmallow root tea for just under 3 weeks using the raw herb. I have had lots of it ( 10-cups a day) also I have started Cystoprotek just a week ago. These are the only 2 things I have changed since my last test which was the good side of normal. I dont drink alcohol now as it hurts! I am looking for anything that may have caused this as it has gone to 5 times over the high end or the range! The doctor said it must be something acute as is has come on quickly any thoughts? I take 2 trqamadol and 2 paractamol daily and 50mg Ami but my tests were good on these before Mazzie

Forum: Interstitial Cystitis

My OAB Symtoms

Dark — Sun, 15 Nov 2009 03:04:26 GMT

Hey, I'm 15 and have been suffering from OAB for about 10 months. I've seen many doctors, and have even stayed in the ER overnight a few times in the beginning.

Some of the symptoms I have are:

can't pee in my pants (even if I try)
takes a while for urine to come out
sometimes have to go right after I just went
little urine comes out

These are some of the symptoms I have and just wondering if they are normal. I'm sure they are but I just wanna make sure and if it's okay, maybe I could hear some of yours? This has interfered so much with my life and I hope I can find help here, and what I've read in these forums is that it can go on for a long time, and I am ready for that, and I will not let it take over my life.

Thank you everyone,

Ben

Forum: Overactive Bladder Syndrome

Toviaz medication-any information pls

lancaster — Sat, 14 Nov 2009 08:40:27 GMT

My mother (86 yrs) has always had bladder infections, but over the past 2 years they have become more frequent. Along with this she is up between 5 and 10 times a night, which in her state of health is extremely hard todo. She also needs to go very quickly, as sometimes she can't seem to hold it too long. The consultant had prescribed Toviaz - one a day - which she started last night. She was disappointed it didn't work, but I explained it needs at least 2 weeks to get going. The consultant also wants to do a cystoscopy to look into her bladder. This is what I am worried about (I have had one and no problems except the pain when going to the loo afterwards. But she is so frail I don't know whether it is worth it or not. She does not have pain (except when has cystitis). She has the correct antibiotic at last for the bacteria! The consultant also said that there could still be an underlying infection which he can't pinpoint. Anyone else had these tablets, I would be grateful for any info.

Forum: Overactive Bladder Syndrome

So unhappy need a boost

Lottie — Fri, 13 Nov 2009 14:05:03 GMT

For the past 2 weeks I have had a flare up and have been off college. I hate the feeling like I'm going to fall behind, and this is really making me feel like a failure. I wish I could control it but I can't. Went to the docs at the start of the week and they gave me 20mg of Citalopram (Celexa) antidepressant because I am constantly crying and feeling very low. I only took them for 3 days but had to stop because I had about 3 hours sleep over the 3 days and my eyes looked like they were going to pop out of my head.

This is really not fair, I'm only 19 I should be carefree and out enjoying life but this is making me so unhappy.

x

Forum: Interstitial Cystitis

Any Help ?

Vic82 — Fri, 13 Nov 2009 11:43:56 GMT

Hello Everyone! I just wanted to say first of all what a fantastic site this is.I have been logging on most days and taking great comfort in knowing that there are so many people who suffer as it can be a very lonely time.

I have always been prone to BC or the cystitis type symptoms associated with intercourse. Looking around this site my story is not half as bad as what some of you ladies/men have to deal with on a daily basis and I think you are all amazing in the way that you are all so positive.

I normally have an attack at least 1-2 year, sometimes I can ride it out without Ab's but most recently I had to succomb to the GP. Since my last bad attack I have been religious in drinking water, weeing/washing before and after intercourse (to the point where it is probably a bit obsessive now)

I also suffer from IBS which can affect my bowel habits constantly. I had a vega test back in March of this year which told me I should cut out cheese, yeast and apples and bananas. I followed the diet religiously for 2 months with alcohol, sugar, yeast products and felt lots better in myself. However, after about 2 weeks I had a very upset stomach and the cystitis type symptoms of pain when urinating, bloated , urgency etc. It lasted for about a week and I put it down to a detoxing type effect of the diet - managing to cope on just drinking lots of water etc.

I carried on excluding bread and cheese etc from my diet up until August of this year when i got married and went on honeymoon. I spent a week in Italy eating pretty much everything I shouldn't have done , bread, cheese etc and have had no end of problems ever since. My IBS has flared up terribly , I have been constipated/then having a bout of not very nice bowel movements as well as suffering with piles. I then had an upset stomach accompanied by another bout of cystitis which lasted for another week and then another couple of days a few weeks after that with the burning sensations and urgency. This seems to be happening in tandem with my not very nice bowel movements and it is getting so frustrating. The last attack in October forced me to go to the doctors. Yet another horrible bowel movement and then it started again. The doc did a dipstick test and prescribed 5 days of Trimethripom (not sure on the spelling) He said an upset stomach can sometimes bring it on but didn't go into any detail. I asked what else I could do and he said drink Cranberry ! Which is obviously no help at all. It was more frustrating and upsetting as this was all over my birthday.
I have now had the York test done (which I have seen some of you guys talk about on here) Thats identified cows milk, gluten, egg white/yolk, wheat, mushroom and yeast and problem foods for me. I am now following this diet for the next 9 months to see if this helps my IBS.

I just feel exhausted by it all, it has been one thing after the other for the past couple of months. The burning has gone when I urinate but the whole area still feels very sensitive and stings . It almost feels like the burning sensations you get with thrush but without the itching if that makes sense. Is this normal even after finishing the antibiotics almost 2 weeks ago? It all just feels very uncomfortable and I am so fed up and down about it. It is affecting my relationship and I just feel so run down all the time. What with the IBS, piles, cystitis and then rounding it of nicely with my period this week I am just at my wits end.
I am so reluctant to go back to the doctor because they just don't understand and I am just losing my patience with the whole thing. I am now taking cranberry capsules, manuka honey and acidophilus and a digestive enzyme to help with the IBS. I have tried the D-mannouse but I was taking one a day as a precaution but still seemed to get it?

I am sorry for the massive post but I am just not sure what else to do now.

Vic xxx

Forum: Bacterial Cystitis