My 80 yr old Mom has this condition and I

[whiteswan]

feel totally helpless to help her! She went into hospital in March 2005 where they kept her for 6 wks giving her bladder irrigation continuously then sent her home with congestive heart failure due to increasing her fluids to flush out her bladder. She is prone to congestive heart failure and had it 2 times before that but the dr wouldn't listen and kept increasing fluids anyway! She also has diabetes and due to her age and health problems cannot get out of the house to even go to the doctor! I got her family dr to send out a antibiotic (Macrobid) yesterday as she has been screaming in pain every time she frequently urinates -- she leaks a lot too. She also has high blood pressure. My 7 yr old son and I live with her and it is painful for us to watch her going through this unjustified agony! I don't know what to do!!! Any suggestions? I am going to make an appointment with her family dr soon and discuss this with him. There has to be something he can give her to get rid of the pain! She can't go on this support sight herself as she is hard of seeing and doesn't know a thing about computers anyway so I am being her spokesperson here. I am glad I found this site! Thank you all for being out there!

[Cheries]

Wow. My heart really goes out to you. I know how it feels to have IC and it is the most painful thing I have ever experienced. I suggest you take her to a pain medication doctor to get her pain under control while they are trying to get the IC under control. She needs an advocate and someone to help her navigate this disease. I would also suggest downloading some of the information from this website. Another information source is the Interstitial Cystitis Association. You also might want to check and see if there is a support group in your area.

[ICNDonna]

The Patient Handbook at http://www.ic-network.com/handbook has some very good information about treatment options available. The IC diet is probably the most important and you'll find it in the handbook.

Sending encouraging hugs,
Donna

[Kara Isabel]

Oh gosh, I'm sorry hon! I know how hard it is to watch someone you love in pain and agony!! ((((hugs)))

Can you talk to her physician that is treating her for the CHF and find out if there are any pain pills that she can take with her heart meds?? That would be a start. Nobody should have to suffer in such agony!!

Kara

[creatingkarma]

I agree, you should go to the doctor with your mom & talk about her pain levels & don't leave until something is done about it. I'm sorry that you have to watch your mom suffer. That's soo sad. Give her a big hug!

[whiteswan]

thank you all for being so nice and responding. I have an appointment for next wk with her doctor -- can't get into him before then as he is a busy man and we have a dr shortage where I live. In the meantime she is still on Macrobid and the druggist told me today to get her Vagisil cream -- anyone tried that? She put it on about half hour ago so we'll see. I took away the cranberry extract tablets she was taking as I read here that cranberries might aggravate the problem. She is also now staying away from tomatoes. Keep her in your prayers and I'll keep everyone posted. Thanks again.

[traceann]

Hello and welcome! My heart so goes out to you, your son and especially your poor mom! I know how hard it is deal with this awful disease. Good plan on stopping the cranberries, and here's a link right to the IC Diet foods list:

http://www.ic-network.com/handbook/diet.html

Donna already gave you the link to the Patient Handbook - it's a wealth of information, and as she said, the diet can be a HUGE helper in reducing pain and discomfort. It helped me greatly, until I got to where my meds starting kicking in, which can take weeks to months, so the diet was my saving grace. Most of us stick with just the "Usually ok" list for the first few weeks until our bladders calm down. Then we start reintroducing foods from the "May be ok" list one at a time with 2-3 days in between, so you can have time to find out if it bugs your bladder.

Gosh, I hope she can start to feel better soon, no one should have to be in that much pain, constantly, it's horrible. Please keep us posted and ask all the questions you need, we will help as best we can! Do try the diet in it's fairly strict form, lots of fresh foods, plainly seasoned, etc. It can really help, maybe work with a nutrionist to make sure she's getting all the best nurtition she can from the limited diet...

Take care of yourself too, that's important as well!

Hugs,
Tracey

[vm]

Does your mom see a urologist? That might be good if her family doctor is unfamiliar with IC.

[whiteswan]

Thanks all for replies/encouragement. I need all I can get right now. My Mom finished the Macrobid that the Doctor sent out and she STILL has the burning when she urinates! I was scheduled for an appointment with him last week but HE got sick so had to cancel. I am scheduled to see him this coming wk to discuss with him some options. She needs something to relieve the burning. She doesn't want to go to hospital after her horrible experience in there the last time so I am doing all I can humanly do to try to get her help at home via her doctor. Please pray that he gets her something that takes the burning away. It is SO emotionally painful for my son and I to hear her cry when she urinates! Our dog ( a 2 and a half yr old 75 pound black Lab) looks so upset to hear her cry too. It is really pathetic! Keep us all in your prayers. Thanks

[Julie B]

Is she with a doctor who knows IC? Not only does diet modification help most patients, there are many medications that help in some form or another. It is so important for her to see a good doctor........

Something that may help her temporarily is a warm bath with epsom salts in the water. She can even urinate in the water if she wants to.........she can always rinse off............

She may be feeling better all ready with the cranberry tablets gone.........

gentle healing hugs............for all of you.............

[Katrina]

:welcome: Hi, I you, your mother, and your son.
Diet is a big factor. There is also a lot of other things that can help. There is a non prescription medicine...you can buy it in the brand names of AZO standard and Uristat....in presciption form it is called pyridium. It is often used for buringing and other symptoms.
Caclium, relaxing the pelvic musscles with heat,

http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is newbie kit from the oldies to the newbies
The links I gave are full of self help and things that a doctor may not tell you but can bring down the suffering. Please be careful with them though some may not be safe for high blood pressure. :grouphug:

[ads]

Maybe you could go ahead and make an appointment with a urologist and cancel it if your don't need after seeing your GP. It can take time to get in with a urologist. There is a list of health care providers on this website.

ads

[whiteswan]

morning after a very rough night of no control over urination and extreme burning upon and after urination. I called an ambulance (she finally agreed to it) and they said she definitely needs to be in hospital! They gave her IV antibiotics as there is pus and blood in her urine and they put a cathater in her so the burning has subsided. She sees a GP in there today as it took them most of yesterday to get her a room as it is packed in there so she spent most of yesterday in the emergency room! Keep her in your prayers please. How prevelent is this condition? I ask that because there are several other women in her area of the hospital with the same thing so is this condition increasing in the number of people it affects and if so I wonder why? Any thoughts?

[sue1]

Im so sorry about your mum,,,well at least she will get some help now that she's in the hosp. (I hope) Did they release her? My heart goes out to you both. ♥

[traceann]

Sending hugs and prayers to both of you! Do they think that maybe she might have an infection (the blood and pus)???

I don't think more people are getting it, but I do think the awareness of it has risen and more people are getting diagnosed correctly with it, vs. just calling it "frequent UTI's" etc..

I so hope she's feeling better soon, please keep us posted, k?

Hugs and prayers!!!!!

[Katrina]

Awareness is growing yes...as far as more people with it...hard to know. :grouphug::pray:

[whiteswan]

They have kept her in hospital and are unsure of when she will be discharged as they are pumping her full of antibiotics and want to run more tests tomorrow. She told me today that a kidney specialist was in to see her today and he prescribed some other drug that he told her would "clear it all up faster". I wasn't there when he was (they never seem to come in when family is there so you can ask more questions!) so I only know what my Mom told me and that was all he told her. She is in good spirits as the burning is gone as the cathater is in so no urinating the regular way right now and she is eating better. I don't know what drug he gave her as she didn't recall the name of it and the nurses always refer you back to the doctors who are hard to track down! As long as it works I guess is all that is really important. Traceann you are no doubt correct in that the condition is now being diagnosed correctly as opposed to being more prevelant. I just wish for my Mom's sake and all of your sake that they would find a CURE!!! I really feel for all of you as I see what my Mom goes through with this awful condition! I'll keep you all in my prayers too and keep you posted as to her progress. Bless you all.

[traceann]

Thank you so much for the update! I have been thinking about her all day...I am most definitely glad to hear she's eating better, it can be so hard to want to eat when you feel so rotten! And it's got be so much less stressful on her now that she is feeling relief, that will go miles to helping her get feeling better! ;) I bet she's breathing a sigh of relief and even sleeping better (even though it darn near impossible to get sleep in a hospital, lol).

I think so many people have been misdiagnosed for so long, that now that it's more widely known about, they are getting the correct "label" so to speak... If it weren't for this site I wouldn't have known about it as my doc never mentioned it to me as a possibility, I brought it up to him!

Do keep us posted, and let her know we are all thinking of her and want her to feel better soon!!!

Hugs,
Tracey :)

[whiteswan]

The doctor decided to take my Mom's cathater out today as it was causing burning and he said it was making it worse! He gave her something to soothe the pain/burning -- she didn't know the name of it and trying to get anything out of the nurses is like pulling teeth . Finding the doctor is like trying to locate Bin Laden so I don't know anything unless my Mom tells me and she can never remember the names of long complicated drugs! She said she aches all over today! I don't know what is going on and I feel so frustrated! She had an ultrasound this A.M. and she said the doctor got her reports from the hospital she was in last yr regarding her condition. She said he told her it was like her bladder was one big cyst! Keep her in your prayers and thank you all for being here. Anyone been in hospital for this before and if so what is the procedure they put one through? I am scared for her and I need to know if this is all normal or if I should be alarmed!

[traceann]

I am so sorry to hear that!! Ugh. Hopefully some will chime in to share their experiences. Does your mom have you listed as a person who can have her medical information released to? Do they even still do that anymore? All the new rules confuse me.....

Sending prayers her way! (yours too!) :grouphug:

[Katrina]

I know quite a few people that have been in the hospital because of IC....but often doctors don't know a thing about it. It really has depended on if they are there because of pain or what as to what is done. Catheders...rescue isntalations, pain meds, checking for infection and treating it if there is one, are pretty normal treatments.

:pray: on the way!

I sign papers for all of my doctors to make sure they will talk to my husband as well as me...it helps a lot!

There are two meds I am aware of that are good for burning....they usually have a die in them that colors urine orange or blue. Orange usually means pyridium....can't remember the blue name right now.

When my IC flare has my whole body aching it often means I have gas (which for some reason I don't always no till it causes me discomfort. Not sure if that is the case with you Mom...but just in case it may help I am letting you know.

If they are saying her bladder is like one big cyst I wonder if they mean she has prolapsed? If not maybe they are just trying to explain the pain? Not sure what they are trying to say.

I sure hope you can get answers from the doctors and that your Mother gets the help she needs.

Seems to me like the nurses should at least be able to give you the name of meds she is on....that should be on her chart. So sorry things are so frustrating. :grouphug:

[edythe]

I have seen some mention on this site of strep nfections found in the bladder, could you tell me is this common, and what type of strep infections are seen, and is there a more prevalent strain found in IC bladders?The Patient Handbook at http://www.ic-network.com/handbook has some very good information about treatment options available. The IC diet is probably the most important and you'll find it in the handbook.

Sending encouraging hugs,
Donna

[Katrina]

Enterococcus shows up more often in patients with IC than in people without IC.

http://www.remedyfind.com/newsletter_archives/Dec_05_InterstitialCystitis.html antibiotic newsletter

[Janie Miranda]

Katrina,
This is interesting. I didn't know this about enterococcus showing up a lot in IC bladders. Funny, the last UTI I had right before I was diagnosed for IC was with a strep B infection.
jane

[whiteswan]

Because my Mom is diabetic they have decided to put her on a mid-range insulin (she used to be on pills for the diabetes) as they could not get her blood sugar under control. High blood sugar interferes with healing . She said the doctor asked her today if her urine is orange. She said she doesn't look at it so didn't know. He said it would be orange with the med he has her on . Her blood sugar is getting better and she wants to get up and walk tomorrow. Keep her in your prayers. Thanks.

[Katrina]

She is on Pyridium. It isn't a good med to take long term but it is very helpful with symptoms at first. There are non presciption strengths so it is pretty good.
:grouphug::pray:
Pyridium (phenazopyridine hydrochloride) is a prescription pain reliever that works by being excreted into the urine and soothing the bladder lining. It is often prescribed for temporary pain relief after surgery, cystoscopy, or catheterization. It is not prescribed for long-term use to control IC symptoms because it can build up in the body and cause harmful side effects. Pyridium colors the urine a very noticeable orange, and care must be taken to prevent staining of undergarments. Patients who wear contact lenses should be aware that occasionally contacts have become stained also.

[traceann]

Oh he must have her on Pyridium (the bladder analgesic that numbs things up). Glad to hear things are getting better, and that she's wanting to be mobile again! ;)

Do keep us posted, and she's definitely in my prayers!

Hugs!

**Looks like Katrina and I crossed in cyberspace, lol.

[whiteswan]

Hi. Thanks for all the replies. I FINALLY got to speak to the weekend dr who was taking care of my Mom. My Mom had given permission for me to be informed of her condition when she was still in emergency but after she got admitted it seems like one department doesn't know what the other is doing (welcome to Canada!) and she had to give consent all over again on Saturday after I told a nurse I wanted to talk to the dr! Anyway, according to the weekend dr my Mom has hydronephrosis (fluid around the kidneys) which they think is caused by urethral stricture (narrowing of the urethal) OR bladder stones. The urologist is going to do a scope on Tuesday to see what is happening and may either remove stones or put in a shunt. The weekend dr told me not to worry. She said my Mom is stable. I know nothing about this so should I not worry or should I be worried? They took her off the orange pills as they said they can't keep her on them too long while still on antibiotics so she still burns when urinating! Keep her in your prayers and you all remain in mine.

[Katrina]

I have heard stunts have caused some IC patients more pain...but they are usually safe just way no fun. (you may want to start a new thread and ask)

I am on long term antibiotics and have a prescription of pyridium (the orange pills) and have never heard anyone say I couldn't be on both at the same time for too long.
That being said extremely long use of pyridium can do dammage to the liver I believe and how well it works goes down in time. Still, sounds to me like her doctors don't understand IC and are looking at this as only an infection.

:grouphug::pray:

[traceann]

I am so glad you finally got to speak to a doctor! :) That's a positive step at least! I am also happy to hear that they have a direction to go in to get to the bottom of this, thank you for keeping us updated!!!

Sending prayers!

Hugs,
:)

[Ginny]

I am also an insulin dependent diabetic with IC (and a hell of a lot more). Watch the high sugars. Everytime my sugar is high my bladder is much worse. When your sugar is high it makes you urinate more which in term causes pain.

ginny

[whiteswan]

My Mom had the scope yesterday and lots of other tests. Two urologists have now determined that she does not have IC (then why does she have the symptoms of it?) and that she has a bad bladder infection caused by narrowing of the urethra which is caused by old age. Treatment: Bladder irrigation, antibiotics and dialation every 3-6 months . I don't know what to say... should I believe that or stay on this site to keep current with IC? Any insights would be appreciated. You all remain in my prayers.

[traceann]

Oh gosh Whiteswan, that's a tough call. I am happy to hear that it's not IC! I would give the treatments a try, and see if there's any improvements. So with the narrowing, she's retaining I gather and that's causing the repeat infections, do I have it right? I hope that's the deal and they can get her back on her feet again and away from all these bladder problems that have been bothering her!

Here's to feeling better soon!!! But, if you have any doubts and she does as well, I suppose a 3rd opinion couldn't hurt as well ;)

[Katrina]

There is no one test that can prove that it is not IC...not a scope not anything.

I can't help being worried that the urologist are going by old info....but it is certainly a tuff call. One thing, if she is going to have antibiotic treatment you probably want to put her ona Probiotic since yeast infections can really bother IC and just incase she has it you may want to protect her from that.

Right now the most accepted theory about IC is that it is an injury....that injury may come from infection, from yeast, from surgery, basically a huge number of things.

In any case I think keeping well informed is a good idea.
So with the narrowing, she's retaining I gather and that's causing the repeat infections, do I have it right
Tracey is very right here....

icnmgrjill) So.. let's dive into one more level. An IC patient has urethral burning that is persistent, but worsens during urination. They are negative for infection and the doctor suggests urethral dilations, as if there is a structural problem with the urethra. Correct if I'm wrong .. but aren't you saying that the burning is actually muscle contractions... or muscles that are so contracted that they don't have proper blood flow.. etc. etc.

(drmoldwin) What you're hitting on is a fairly controversial issue in the IC world. Patients who present with urinary urgency and frequency, in addition to intense burning with urination, have been classified in the past and still in the present by some as having urethral syndrome.

(drmoldwin) It is now believed that urethral syndrome is simply an atypical form of IC. Many patients with urethral syndrome have accompanying pelvic floor dysfunction. In the past, many clinicians would perform a procedure called urethral dilation. They presumed that poor urinary flow was due to an actual narrowing of the urethra. In fact, in most instances, this is not the case. The poor flow of the urine is due to muscle spasm in that area. Therefore, most clinicians today do not perform urethral dilations as a first line approach. That's not to say that urethral dilation is a terrible thing to do. However, in my opinion, it's not a first line treatment since it doesn't address the primary problem.

(drmoldwin) Interestingly, many patients have had improvements with dilations however, the typical scenario that I see very frequently in practice is that of a patient who comes to the office with these symptoms stating that their previous doctor initially performed a urethral dilation. It helped for six months and the dilation was, therefore, repeated. The symptoms then came back in 3 months. Yet another dilation was performed and it did not help.

(drmoldwin) In our practice, the most common therapies that have been found helpful are conservative approaches. We advise patients who have significant accompanying pelvic floor spasm to take warm bathes on a twice-daily basis. They are instructed to avoid pushing and straining with urination, since this very frequently tends to worsen muscle spasm. Constipation is aggressively controlled with diet changes. Often laxatives are used. Finally, we found that muscle relaxants can be extremely helpful to decrease symptoms.

(drmoldwin) Another problem that often occurs... in patients who have this problem is nerve malfunction. We frequently will dispense medications that can affect the overactive nerves in this reason. One of the classic medications that is given in this regard is Elavil which was originally used as an antidepressant. When used in low doses, this medication and other similar medications have been extremely useful in decreasing chronic discomfort.


Urethral dilations don't help IC but can help to prevent infections if retention is part of the problem. One problem with them is that they can cause the pelvic musscles to spasm....which pretty much increases the retention and problems you were trying to treat....so that is a concern of mine in this situation. I also want to warn that they can cause scar tissue to build up. Even if they are right on what is going on you may want different treatment. Research Pelvic Floor Dysfunction and let me know if you want some self helps to avoid infections.

In any case I hope your Mother does a lot better. :grouphug::grouphug::grouphug:

[purpleviolet]

Whiteswan- Urethral dilations gave me IC! I wouldn't subject anyone to that old form of treating infections. Ask the doc when he learned about them helping. I bet it was years ago. If she keeps on getting infections keep her on d-mannose if you can afford it. It may help reduce her susceptiblility to e-coli type infections and it is not a drug. You can buy it online but search this site to see more about it. My heart goes out to you. I have a mom in bad arthritis pain and its hard to see them hurt. PeeVee