IC Interstitial Cystitis Experience

[Carolina]

Dearest angels,

I just went through a typical experience with my IC.

I had a UTI, which was treated first with Cipro, for about a week.

The UTI was RESISTANT to Cipro, so then I took a different antibiotic for a week.

By then I was pretty miserable from the UTI, as it had been going on for about a week before I went for the first visit,

And then it went on for another week with an ineffective antibiotic.   

After the second antibiotic, and third week,  the UTI symptoms were really worse!

Yes, I had pain, aches all over, a sick headache, urgency, everything that goes with a very bad UTI.

BUT, THE UTI WAS GONE!

So what was going on? 

My beloved IC, Interstitial Cystitis was triggered into over drive.   

I have pain, trouble sleeping, ache all over (like the flu), back ache, urinary pain, bladder pain, sick headache, everything that would indicate that I am seriously ill.   My hands and feet (with terrible ostearthritis throb constantly, as does my neck).

BUT..........it's 'just' the inflammation of my bladder, which is the IC.

And it is setting off all the other inflammation responses in my body.

I learned three years ago that the solution to this pain and agony is MILD EXERCISE, in the water.

As counter-intuitive as it seems, mild exercise seems to produce whatever I need to calm my inflammatory response and put the beast of IC and pain back in its cage.

So I'll try to get to the pool a bit later this afternoon.   

It's good to know the UTI (Urinary Tract Infection) is gone, and that I do have a mechanism for feeling better.

But it has been hard being a good hostess to house guests, and getting ready to be the honoree at our 50th wedding anniversary party tomorrow night, while feeling like a train wreck.

On the other hand, it is a great relief to have the most recent urine test and to KNOW that the UTI IS GONE.   

I really do NOT know how people survived in the past with these same conditions and infections, and NO antibiotics, no tests, no support.

I'll keep you posted, angels.

Hugs

Elaine

[slccom]

Congratulations on the 50th Anniversary! I'm sorry you are feeling so physically miserable, though.

My parents would have made it to 50 if my father hadn't died. 

Sharon

[eyeamdry]

Congrats on your 50th anniversary, Elaine.  Ours is July 13th, next Friday.  You don't see many of these any more.  I know Irish is included (or close) and some of the others, but this is becoming a hard thing to obtain.  I think you should get a million bucks upon celebration of a 50th wedding anniversary.  I just thought of this and I think it's an amazine idea.  Sorry for highjacking the thread.  Now, back to IC.  Lucy

[eye2dry]

carolina...

have you ever tried Elmiron for your IC?

my oldest daughter takes it along with Elavil in order to function. without it she feels so uncomfortable she can't think of anything else...and is very "cranky".

hope you have recovered enough for your 50th anniversary.

Congratulations!!!

eye2dry

[lori]

Hi Elaine & fellow sjoggies...

I guess after reading posts on IC thruy the years I now realize I must have this... in fact just had a bad bout yesterday- gee, when traveling wouldnt ya know!!!

wht has helped me is the AZO cranberry urinary support pills.... and this time with a painful bout the AZO max stregnth with is a medicine OTC tht calms urgency and pain....

just thought id share...

ive had overactive bladder for years and off and on syptoms ... but have bleen so blessed to have it mild- however.... perimenopuase has kiced in big time and wel... just read that makes it worse... so for all the ladies going thru the change, hang on!!! cuase we needed one more thing to add to the list right??? LOL

also if you google natural supplents for IC says that vit C, E and some others are a good thing....if it were not for natural suuplements to add to my meds id be ahurting puppy.

hope this can help someone...

God bless

lori

[Carolina]

Dearest angels

Yesterday is was 105 here in lovely NC!  And I paddled around in the pool for about an hour, and felt better right away.  Much less pain.

Oh I forgot to say that my skin burns and hurts, like the flu, when the whole thing goes into overdrive.

eye2dry, I did try Elmiron (which still sounds like a BAD country song title to me) but I am ALLERGIC to it, sooooo no go.

I do take Cymbalta which is both an antidepressant AND a pain reliever, and a life saver for me.

I plan to go to the pool again this afternoon.  I don't have to exercise much, just really keep paddling around and stretching a bit.  It IS amazing, really.

Oh, yes the 50th anniversaries are dropping, mostly because young adults don't marry in their 20's any more, more like 30's.

I actually married at 16 and divorced by 18, and REMARRIED at 20.  So I managed 50 years, but only by hanging on with all my might, and resisting the urge to kill frequently!   And by marrying a terrific guy.

Right now Mr. Terrific Guy is taking up the fixtures and floor in our guest bathroom.  He's going to lay a new hardwood floor in there today.   Yep, 'terrific' barely begins to describe him.

Friends threw us a lovely 50th party, and 16 members of our family were there, plus wonderful friends, and more food that you can imagine.....four cakes!

My hands still hurt quite a bit (that's the worst osteoarthritis) but otherwise I'm doing pretty well.

Thanks for the good wishes and advice.

OH, cranberry juice is not recommended for IC, by the way.

Here's a general overview:

http://www.nlm.nih.gov/medlineplus/ency/article/000477.htm

http://www.nutritionarticlesonline.com/bladder_interstitial_cystitisIC.html

[cargillwitch]

I hate even seeing threads about IC. I believe I had an 8 month stretch of it about 8 years ago. It was agonizingly uncomfortable. It made it almost impossible to think of anything else!

I had my first UTI during my fourth pregnancy, which quickly became a kidney infection. From that point I would average 2-3 per year ( or so I thought) but often urinalysis would not show anything.

I also learned that all the usual suggestions for UTI ( cranberry, uva uvsi etc.) seemed to make it WORSE. Taking vitamin C was akin to asking to later pee pure acid. Excruciating.

After the 8 month stretch  of almost back to back episodes ( stressful post divorce)I went two years before another brief bout. It has been 5 years now since I was last treated for a UTI but I fear that discomfort perhaps more than I should. The panic feeling of it- that relief will not come!

Allthough I was never diagnosed with IC, I am sure now looking back and in light of all the autoimmune activity I have had for some time, that was what I was dealing with.

I have a huge fear of it returning!

I am so very sorry you had to deal with that awful discomfort at what should have been a joyous  and celebratory experience!

[CAT1962]

You know..in the fall of last year I had every UTI symptom possible. I remember standing up once and having some horrible burning, stabbing pains down low in my bladder, but the blood work (went straight to an Urgent Care Cntr) showed NO infection!...?....It continued...I went to my Rheumy a week later and he ran blood work, never said anything to me. I had my husband pick up my report for my new GP (mind you the Rheumatologist NEVER said a word about my blood work!) and the new GP it was high in the categories suggesting UTI. Weird!

[Carolina]

Cat and all:

IC is diagnosed best by a cystoscopy of the bladder.  It shows up clearly on visual inspection.

But really there aren't many really good treatments for IC. 

The key is to live with it.

I had a very good gynecologist who suspected it.  Since he knew I wasn't "imagining' the pain and misery that my UTI caused after it was gone.

It's good to know that 'it's not all in your head' but it's hard when there aren't very many good treatments.

For me, exercise, mild and in the water, is the best solution. But I know I'm lucky to have found that.

And even then the pain and misery are acute.

best wishes to you all

Hugs

Elaine

[susanep]

Congratulations Elaine,

I was married 27 years the first time, and this August it will be 14.

I have had many diagnosed kidney infections, and many of the same things that would show no infections. Years ago the Urologist did the scope, and said the lining of my bladder was very red and rough.

I am sure it was also the added sjogren's then. Another Urologist told a gp I once seen that many have continued pain after one has cleared up due to the inside lining of the bladder, because after the infection it is left for awhile like burned skin. So that is where those pills help for the pain in the bladder when needed.

I understand the comments on perimenopause too. Well, I am 59 since May, and it's been since January that I had a period.

Take Care Elaine
susanep

[lori]

well.. my syptoms persisted so went to urologist today... gonna have a test in two weeks to dtermine how much liquid bladder holds  then two days later a cystography ...

however, he did say i have white cells present so he is sending urine to the lab to test for wierd bacteria that they normally dont test- all this came on after being at beach.....

the AZO cranberry probiotics make me feel better... that may indicate it is NOT IC

he told me to keep taking them until he cn get lab results and tests done.....

yipeee...


frequency is gone today- just having wierd senstion and some pain.... not liking this at all

[Carolina]

lori, I ALWAYS test positive to the home UTI tests, because I always have leukocytes (white blood cells) in my urine.

Leukocytes are part of IC.   The result of the inflammation I guess.

If something makes you feel better, that is good.

Keep us posted on the result of your tests.

Hugs

Elaine

[Patty]

I am so sorry. Of all my ailments, IC is the thing I hate most of all. I find it very upsetting, which just makes everything worse and the gp dr is not very helpful - just says - oh it's not an infection. (In other words, "live with it and get over it")

I am so happy to hear about being in the water. I will try that. We have a community pool and I just learned there is a swimnastics class at the Y for only $2 a class.

Have you been on preventive antibiotics for the UTIs? I was for many years and then developed resistant strains. My new urologist is reluctant to put me on a preventive again but I am so sick of these frequent UTIs. I think the IC seems worse now that I get UTIs all the time.

Congrats on the anniversary! I celebrate 35 years next summer and we married young so should make 50 unless I keel over first!

[Carolina]

Ahhhh Patty, yes my GYN put me on three months of Macrobid, to try to get rid of the UTIs, this was in 2007. 

THEN I would have a real UTI every couple of months, and be on Macrobid again, but with the rebound pain and confusion that finally resulted in the diagnosis through cystoscopy of IC, in December 2008.  I was in terrible pain most of the time.  The pain of the IC AFTER the UTI is always worse than the UTI, actually.

By Spring of 2009 I was having trouble tripping and falling, and by the Fall of 2009 I found I could no longer ride a bicycle.

WHY??  Because I had developed Peripheral Neuropathy (PN) from the Macrobid!

This was diagnosed by a neurologist in December 2009, two years after I started the Macrobid as described above.

From the NIH site (National Institute of Health, THE main research funding agency of the US Govt.) warning on Macrobid:

Neuropathy:
Peripheral neuropathy, which may become severe or irreversible, has occurred. Fatalities have been reported. Conditions such as renal impairment (creatinine clearance under 60 mL per minute or clinically significant elevated serum creatinine), anemia, diabetes mellitus, electrolyte imbalance, vitamin B deficiency, and debilitating disease may enhance the occurrence of peripheral neuropathy. Patients receiving long-term therapy should be monitored periodically for changes in renal function.
Optic neuritis has been reported rarely in postmarketing experience with nitrofurantoin formulations.


http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=9446

Would I take it if I had it to do over?  Sure, 'cause no way would I ever know that this fairly unusual side effect might apply to me, and a chronic UTI is scary.  Especially since I developed septicemia from a kidney infection a few years early and was close to 'exiting stage right'.

We are often between a rock and a hard place with our various conditions, for sure.

After going through the UTI and the subsequent IC flare, I also got some sort of intestinal thing, and I haven't slept well for days and days and feel exhausted.

NOW, this is where I read about REAL illness (this forum) and REAL bravery in the face of medical crises, and I know that I am lucky to be complaining about this piddly stuff in comparison.

I think always of Sass and so many others, Kami (where are you?)........

But somehow what is going on inside our own bodies is hard to work around some days more than others,  for sure!

Hugs

Elaine

PS  I did think I would keel over first, by the way.  Just goes to show you!  Or me.

[gold55]

Happy 50th Elaine!  I hope you continue to feel better each day.  You sound as if you have everything under control