interstitial cystitis

lvsbks · 15-10-2013 2:01pm

Hi Margaret,

Wow, I am sorry for what you have been through. My story is similar but I never was treated with DMSO. I gave up on doctors because they were making me worse! The antibiotics caused stomach problems so then I had 2 health problems! The cystoscopy was one of the most painful things I've experienced. I only went to 2 different physicians. One of them performed day surgery, stretching my urethra, that did not have any improvement on my health. After that I was done with them.

The diet and prelief were what gave me the first bit of relief. I find any kind of stress, whether physical like not sleeping or the heat or family stuff can start me on a downslide if I don't get extremely proactive on my diet, getting rest and drinking water. The hardest thing for me is setting limits. I'm always in denial when I feel better. Especially for spicy food and carbonated drinks!

A few years back I started taking Glucosamine, MSM and Chondroitin. I read about it on a board. Within 7 days I felt better. I buy the Target brand and take 500 mg a day but double it if I am stressed. I think it and the prelief are alkaline in nature and they balance a diet that is too acidic but I'm not a scientist. I hope you are feeling good today!

Margaret monks · 17-10-2013 3:28pm

I agree that stress really aggraves the condition,I'm not that convinced that diet plays a huge part.im good today which is great and I will try to stay positive till the next occurrence .What is prelie?Hope your doing well too

lvsbks · 17-10-2013 11:39pm

I think that is what baffles the drs, the range of symptoms. I seldom have urgency problems, mostly pain.

Prelief is an over the counter antacid that I take when I drink or eat something spicy or acidic, usually a coke. I take it once a day with my caffeine fix. I buy it at Walgreens but I think you can order it online. It is very inexpensive.

Diet is definitely an issue with me. Of course a couple of nights without good sleep can do the same. Again we are all unique.

Margaret monks · 18-10-2013 2:22pm

Thanks for your interest .Will try prelief and see how I get on .Take care

Mollyrose99 · 08-03-2014 11:22pm

Hi just spotted this post on IC , just wondered if you had any success with treatments here in Ireland. Have been suffering from this since last summer and would live some tips and advice on how to cope with it. Many thanks mollyrose
quote="LUONATTA;82602054"]Hi, I noticed there were some responses to thread about Interstitial cystitis and commonly being confused with cystitis.
IC in short is a chronic inflammation on the bladder wall.
cystitis is a urinary tract infection and is usually treated with antibiotics.
The two are in no way related and has to be understood that we are talking about INTERSTITIAL cystitis.
I am almost 2 years on now with IC and have learnt several methods that relieve my pain and symptoms. I found that acupuncture helped greatly with the pain and also taking D Mannose which is a uti cleanser , it helps with low grade bacteria.
I hear you kimdoll. I was also on amytripline and many other prescription drugs and they do help although the side effects can affect everyone differently. i was like a zombie on ammy, but my IC buddy in Dublin whom i met on boards is getting on great with it. Your doctor/urologist would be best to advise you on how to lessen the inflammation. did you get offered cystistat treatments?
If you need support Kim, I would only be too happy to chat to you bout the trials and tribulations of this condition. but i have to say, i got my life back and have learnt to live with it and with careful consideration on diet and lifestyle you will find your trigger points and be able to cope better. I am sorry you are stressed . please do email me at any time and maybe we can start our own support group !

[/quote]

king_of_inismac · 24-03-2014 8:21am

There's a prof. In the Blackrock clinic that specialises in it called Mr Michael Murphy. Very competent and profession and has a lot of experience treating IC.

nubby · 02-08-2014 10:23pm

Hi am also suffering from IC it is making my local life v miserable and am v frustrated by it and general lack of medical knowledge or interest.
Can anyone recommend a urologist that is interested in treating this condition?
To date I have tried cystostat x 6 treatments, amitriptyline, prelief, homeopathy. ...and loads more.
Its getting me down a lot and don't know what to do next.

Findaloo · 06-09-2014 4:30pm

I have an inflammed bladder . I have elk mated practically everything from my diet except the most bland food. No tea coffee chocolate nothing red, spicy, alcohol, dairy and wheat. Losing it. Tried all treatments except instillations . Have seen three urologists and a physiotherapists . I wish there was more public awareness about this. I feel so alone in this. I was told after cystosopy that it wasn't IC but inflammed bladder. Have the same symptoms but no ulcers in bladder. I feel like my life is in limbo.

Larianne · 09-09-2014 11:08pm

There is a good facebook page: https://www.facebook.com/InterstitialCystitisAssociation

There is a lot of information posted by the Association as well as posts from IC sufferers.

Hope it helps!

loucat · 12-09-2014 2:47pm

Hi Finaloo, I feel your pain...as Im sure everyone with a bladder issue does, are their any foods or treatments that can help address the inflamation, a hot water bottle always helps me but its not always practical. I wonder why they didnt say you had IC. I had 3 cystoscopys in the same hospital before I was diagnosed with IC. I hope you find a way through this.

lorriemac · 23-09-2014 3:39pm

Hi All

I am 58 years old and I was diagnosed with IC back in February following a long battle with recurring UTI's and feeling absolutely terrible, lots of hot sweats. The consultant placed me on anti biotics and anti inflamatories along with monthly bladder instillations. I must say they have helped and I have been feeling much better until last weekend. I was in the canaries on holidays, drank loads of water to keep hydrated but on the last day I got a very upset stomach and had to take imodium to help me get home. The inflatmation kicked in within a few days and it has been really bad, getting a little better today, but has knocked me back. Don't know if it was because I had too much wine ... maybe, but you've got to let loose every now and then. Best of luck to everyone!

loucat · 23-09-2014 3:52pm

I found that flying is hell with IC and I think its not just me who suffers worse with the condition when I fly. The next time I go on a plane, I am going to take a course of antiboitics or a course of the D Mannose tablets to combat it with me so when the pain kicks in I can have something there to combat it. Did you take the antiboitics for long which the Consultant perscribed? Do you think the anti inflammatory tablets worked? Are you still on them? Sorry for all the questions. I think wine does affect IC, I think you have to take something with it to ease the inflamation it causes. Its hard to get it right.

lorriemac · 23-09-2014 4:24pm

Hi There

No problem with the questions, sometimes when IC is causing problems its easy to forget that you are not alone. Anyway, I have been on anti biotics since May and also anti inflamatories and I do believe they have worked very well, also the bladder instaillations. Dont know what I will do when I am finished. I am going back to the Consultant next month and will see what he advises. I will take you advice on the old vino and dilute with water. Have given up drinking brandy - almost killed me.

Have a good evening.

loucat · 23-09-2014 10:39pm

That is brilliant that your Consultant has perscribed the antibiotics for a long period because I have read some testimonies from IC survivors in the USA who were cured completely from IC through antiboitics which they took for a period of 1 - 2 years. Its sounds like your Consultant is on the ball, you are so blessed! It took me 3 cystoscopies in the same hospital with 2 different Urologists to get a diagnosis of IC. Ive no health insurance so Im battling away in the Public system which is a nightmare...oh how I wish I had VHI, they dont insure you for pre existing conditions for a period of up to 5 years. Fair play to you for giving up the brandy. Ive had Cystosat put into the bladder, awaiting the last one now and I believe it did make a difference. I find D Mannose that I got in a Health food shop brilliant for when I eat or drink something which causes me problems, like today a pear youghurt which has citric acid in it caused me major problems, citric acid is in so much of our food and it causes me serious problems with pain. Hope you have no pain now.

lorriemac · 24-09-2014 9:19am

Hi Loucat

Thank you for your reply. My consultant is Mr Tomas Crea who is based in Beaumont an he is the leading physician in Ireland in IC. He is a lovely man, very easy to talk to but pulls no punches. He came to my bedside after I had the exploratory procedure, his exact words were "you have a serious problem, but its not cancer", almost flored me, but there you are he shoots straight from the hip, no flannel. What is D Mannose - I have not heard of it but am willing to try if it helps.

Great to talk to you. Have a good day.

loucat · 24-09-2014 10:57pm

Lorrie Mac, D Mannose can be got in a Health food store in powder or tablet form, it is tasteless and disolves into water, its brilliant, here is the blurb on it below. I might try and get an appointment with Mr Tomas Crea, Ive no health insurance but would like a 2nd opinion on this. Ive taken the info on D Mannose from a website on cures for iC, today I was still suffering because I ate three things yesterday which had citric acid in them, I knew the urethra was so inflamed that no urine could come out, nightmare. Im never ever in my life taking anything with citric acid in it again. Are you off the tea/ coffee/ fizzy drinks/ tomatos and citrus fruits with your IC? I only drink Barley Cup now. Ok, I'll let you get reading this and sign off, thanks for your info and input. Take care. Loucat

What is D-Mannose?

D-mannose is a naturally occurring simple sugar, closely related to glucose. It is found in cranberries, peaches, apples, other berries, and some plants.

It can be purchased in a supplement form, either as a powder or in capsules.
How does D-Mannose work?

Over 90% of UTIs are caused by E. coli bacteria, which are found in normal gut flora in the intestinal tract, but do not belong in the bladder or urinary tract.

This is not the same strain of E. coli that can end up on our dinner plate from unsanitary food processing and cause severe illness.

A lingering or underlying E-coli infection is said to be one possible contributing factors in the development of interstitial cystitis.

The standard UTI tests can miss these low-grade infections, which may help explain why some women and men feel as if they still have a bladder infection even after a round of standard antibiotics and subsequent negative UTI results from their doctor.

Unfortunately for us, bacteria are smart and efficient.

The cell walls of E. coli are covered with tiny, sticky fingerlike projections (consisting of an amino acid-sugar complex, also known as a “glycoprotein” or “lectin”), that allow them to take hold of the inside of the bladder wall and urinary tract. When this happens, the bacteria is difficult to flush out via the urine.

Enter D-Mannose.

D-mannose can stick to the E. coli lectins to a greater degree than the E. coli can stick to our human cells. Although D-mannose is a simple sugar, most of it is not metabolized and when a large quantity of D-mannose is ingested, almost all of it spills into the urine via our kidneys and coats the E. coli so it can no longer adhere to the inside walls of the bladder and urinary tract. At this point, they can be rinsed away through urination.
What is the correct dosage of D-Mannose for IC?

Although the average person with an acute bladder infection may receive a beneficial, medicinal effect by consuming large amounts of cranberry juice (naturally high in d-mannose), this is neither practical or safe for someone with IC.

With IC, you cannot tolerate acidic fruits. In addition, consuming large amounts of fruit juice results in consuming large amounts of sugar, which can feed unbeneficial yeast and wreak havoc on blood sugar regulation.

If you want to give D-mannose a try, you will have to use it in a supplement form, either as a powder or in capsules. I recommend the powder, as you can take in a greater amount at once and anything in powder/liquid form is usually more absorbable than in a pill form.

For IC, you can try 2 grams, 2-3 times a day and continue this for at least 2 months to see if there will be any benefit for you.
Possible side effects and precautions

Make sure that you purchase a product that is pure D-mannose without any cranberry or cranberry extract added to it, as cranberry is a notorious IC irritant.

nubby · 04-10-2014 7:38pm

Lorriemac interested in finding out more about Dr Mc crea as am trying to decide if I will go to Uk to c specialist there as he does antibiotic therapy. What tests did you have was it just cystoscopy and were you on specific antibiotics or just normal ones??

lorriemac · 06-10-2014 4:14pm

Hi there, sorry for late reply. Mr Crea is the leading specialist in this country in IC, he works out of Beaumont Private Clinic. He started by conducting an exploration of the bladder and discovering the inflamation, he then put me on bladder instillations, antibiotics and anti-inflamatory tablets at night for 6 months, I am still on them. I was on holidays in Lanzarote three weeks ago and feeling great, but got a bout of holiday tummy on the way home and had to take imodium, that totally messed me up and the inflamation flared up again. I am much better this week, but disappointed that even though I am on treatment, I still got sick. Anyway, I hope you find your answer, be it here or in the UK. Best of luck and let us know how you get on.

I.C sucks · 19-01-2015 9:35pm

Hi I was diagnosed with Interstitial Cystitis in 1993.
I am in the process of attempting to set up a reputable support group for Irish sufferers of Interstitial Cystitis.
I have made a start on a Facebook page called Irish Interstitial Cystitis Support Network but having limited I.T skills and only 1 hour a day web access I am limited what I can do.
I have been busy emailing experts in all fields both conventional and natural approaches to I.C management so as we have an appropriate panel of experts.
I will update you as able.
Interstitial Cystitis awareness month is September anyone with an idea re this please post on the Facebook page.
Take care everyone.

Alex1950 · 01-04-2016 10:02pm

LUONATTA wrote: »

Hiya, I was diagnosed with interstitial cystitis in March of this year. There doesnt seem to be a lot of information or understanding from the medical profession and it all seems a bit hit and miss for treatments. I am curious if anyone else has been diagnosed and what has helped or hindered them in dealing with this condition.
I have encountered various different issues myself and have also found a number of methods that may help other sufferers . if anyone is interested or would like to discuss this condition. ?

Hi - I have just checked out IC on boards.ie - I see the conversation is quite old but if anyone out there is still interested - I am in Offaly - the 1st meeting of the Irish support group is being held in Oughterard this Sunday 3/4/16. Am looking for someone to car pool with. Alex

phoenix10 · 19-08-2018 1:37am

LUONATTA wrote: »

Hi, I noticed there were some responses to thread about Interstitial cystitis and commonly being confused with cystitis.
IC in short is a chronic inflammation on the bladder wall.
cystitis is a urinary tract infection and is usually treated with antibiotics.
The two are in no way related and has to be understood that we are talking about INTERSTITIAL cystitis.
I am almost 2 years on now with IC and have learnt several methods that relieve my pain and symptoms. I found that acupuncture helped greatly with the pain and also taking D Mannose which is a uti cleanser , it helps with low grade bacteria.
I hear you kimdoll. I was also on amytripline and many other prescription drugs and they do help although the side effects can affect everyone differently. i was like a zombie on ammy, but my IC buddy in Dublin whom i met on boards is getting on great with it. Your doctor/urologist would be best to advise you on how to lessen the inflammation. did you get offered cystistat treatments?
If you need support Kim, I would only be too happy to chat to you bout the trials and tribulations of this condition. but i have to say, i got my life back and have learnt to live with it and with careful consideration on diet and lifestyle you will find your trigger points and be able to cope better. I am sorry you are stressed . please do email me at any time and maybe we can start our own support group !

Hi there! Cystitis is not, as far as I have been told by my urologist, a UTI. It's inflammation irritation thats travelled up into the bladder if it's cystitis. It's not lower in the ureter or urethra

jccg · 24-03-2020 11:21am

so glad to find this thread, I have been drinking cranberry juice ,,,I was told to stay away from tea coffee drinking chocolate ordinary or decaff,
I really miss my coffee and do any of you get to drink even a cup of coffee?
also can't understand it when i get pain when i'm sticking to the rules rigidly,
lookinf forward to reading more info and anything that works for you

interstitial cystitis

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