IC for me too?

[funkyic]

Hello Everyone,

I am a new member to the forum, after having been an active member on the IBS forum. But here is my story. I need to see what you all think.

About a year ago I was hospitalized for a week with what appeared to be a nasty case of food poisoning. And since that time, my GI has been problematic (IBS). Have had multiple conoloscopies, CT's, SBFT's, etc. and I think we have pretty much ruled out IBD.

Over the last several months, I have been noticing almost constant lower abdominal/pelvic pain with more frequent urination of much less volume. I am a male (41) and have had cytoscopy, urodynamics, ultrasound of prostate, PSA, etc. performed recently. They tell me my bladder muscles are weak. My urine stream has been less strong for a while. They tell me my prostate looks pretty good.

The pain is like a burning feeling, like my bladder is full most of the time even though I don't believe that it is. My docs have not yet said cystitis. Does this sound like cystitis to you?

Please know that over the last couple months I have been having drenching night sweats, along with difficulty in sleeping. Does anyone else get night sweats, guys?

My Uro thinks I have pelvic floor issues and is sending me off to physical therapy.

Now since I can no longer tolerate the pain, which used to subside somewhat toward evening, I am wondering what drugs the doctor can give me to alleviate some of these symptoms. Any help would be appreciated.

This is really starting to control my life. Now I have to deal with this on top of the IBS. Thanks!

[patricia1]

Hi funkyic...like the name...anyways .

Sorry about all the problems you have been having. I cant say for sure that you would have IC. Has your uro suggest either a cystoscope with hydrodistention or a PST (potassium sent. test)? for me with my IC I have the pelvic/bladder pain, urgency and frequency. I also have the burning you are descrbing. Everytime I go to the bathroom it burns when I urniate. I also have the "gotta go" feeling all the time. Even when I have emptied my bladder and as soon as I am done I still feel like I need to go. I have had IC for close to 11 yrs now. And for me it took over 5 yrs just to get my diagnose.

I find that Ultram for my pain works really well. But there are a bunch on here that it does not work well for them. What it is, is a non-narcotic pain med, but works with the brain like a narcotic would. One thing about it though if you take on a daily basis, like I do, and just stop it, you will have withdrawal symptoms similar to narcotic pain meds.

I dont have problems with night sweats, but I do have problems with a good night sleep. Due mainly to have to get up a go to the bathroom.

Have you tried looking at the IC diet and maybe trying this. It could help with your IBS to. Also alot of people with IC tend to have problems with IBS also.

Again and I hope things start looking up for you

[Sarojini]

This could well be interstitial cystitis if no bacteria has been found in your urine ... note that just plain "cystitis" usually means a bacterial urinary tract infection, so we differentiate ourselves here by using the full name, or just "IC"

I would keep pushing for a formal diagnosis. Have you had a cystoscopy with hydrodistention under anesthesia? IC can hide from the in-office type of cysto, but signs that point to it can become apparent when the bladder is stretched. Now, patients are often diagnosed via the potassium sensitivity test... in this test, a solution of saline or water is put into your bladder via catheter, and drained, and then a solution containing potassium chloride is inserted. If the potassium insertion mimics your symptoms or causes pain, it's a good sign your bladder lining is damaged, and that points to IC. Note: They do put an anesthetic in your bladder after the potassium test so you won't be in pain all day as a result.

You can also try the pelvic floor physical therapy your doctor has recommended in the meantime, since many of us here on the boards also have pelvic floor dysfunction along with our IC... they seem to go hand in hand, likely because your muscles tense up against the pain and urgency the IC produces.

Also try the IC Diet if you haven't yet -- it's in our Patient Handbook at http://www.ic-network.com/handbook. This diet is an elimination diet that removes all sodas, coffee, citrus fruits, chocolate, and other things from your diet, as these can make bladder pain worse. It's tough to stick to in the beginning, but if it helps your symptoms, it can be well worth it.

As for night sweats -- definitely talk to your doctor about that as it can be a sign of an infection brewing somewhere in your body or several other nasty things. I will tell you that I get night sweats sometimes but we do not know why, since every test I've had to date is normal.

And on the pain question, have you tried things like Pyridium or UTA capsules? These are urinary tract anesthetics... they do turn your urine funky colors (Pyridum = orange, UTA = blue) but they can help many with that burn feeling. There are also antispasmodic meds that can help, some low dose antidepressants, and of course, opiates as a last resort. Check out the "Treatments" and "Pain" sections in the Handbook for a good, complete listing....maybe there is something you can try there.

[funkyic]

Thanks All!!

Wow, the responses are very quick and thorough. I appreciate all of you!

I will print these messages out for reference when I go back to the Cleveland Clinic next week. Forget to mention that is where my GI and Uro docs are. So I feel I am in the right place to get to the bottom of all this finally. Yet I am still frustated at how slowly things move along.

I have not had the cystoscopy with hydro under anesthesia, just the urodynamics when awake. The potassium has also not yet been tried. They also did an ultrasound of my prostate. These are good questions.

Dr. Shoskes, my uro, felt all of my muscles were pretty sore down there, hence the physical therapy. I agree that I need to go forward with it too.

I am thinking the night sweats could also be from an infection, or just the stress of all of this. But I worry about a form of cancer that has been missed. My wife used to have drenching night sweats from Non-Hodgkins Lymphoma...

Am going to explore the IC diet. I would guess it is similar to an IBS diet.

It helps to be able to talk to all of you, and get ideas. I feel like a veteran with IBS, but this IC thing is new (but equally disappointing).

[stacyY]

Hi Funkyic
Sorry to hear of all your problems. Its not fun at all. But some of ito me sounds like most of us here though.
I myself, an going threw some of the things your talking about. Now my doc also thinks I have the Pelvic Floor Dysfunction. ANd wants me to go to PT for it also. I also have a hard time to urinate, or to even start to go. And I am haveing really hard time lattly to empty compleatly. Some times i have to just come aback after a while and finsh going. I had been straining to try to finish to go, but its not a good idea to do it.
After reading the read defination of the Pelvic Floor Dysfunction(web site is http://www.northshorelij.com/body.cfm?id=920 ...just copy and past this it will go right to it.) This also had info for men with pelvic floor dysfunction.
IF your getting infections a lot,then maybe ask about precautions, I have been placed on an antibiotic for 6 months. Its really helped me a lot.
Also you can get over the counter, Prelief, it helps with the acid in the urine. helps to control the pain also.
And for one major thing people tell you to drink cranberry juice, DONT! if you have IC it wil just make it worse.
IF you go for the PT, let me know how it goes for you. I am not sure if i will be able to go cos of my insurance, but wondering what they do for it.
thanks good luck and take care
stacy

[funkyic]

Hi Stacy,

I am starting PT this week at Cleveland Clinic. They already had me on the biofeedback machine to show me my tension levels, and they are high. They sent me home with 3 exercises. But this coming week is where we really get into it. I think my insurance is covering al of this pretty well, but one never knows until the bills come it. But I have already resigned myself to the fact that none of this will be cheap. But at this point, I don't care so long as I get answers and relief.

It's funny what you say about Cranberry Juice. I have been drinking that nasty stuff lately because I thought it would help. I did take a couple Pyridium per a previous recommendation and so far, I notice some relief. I will look into Prelief.

I worry about going on another antibiotic because I also have IBS and those meds really bother my GI. I have been on many antibiotics over the last year, mostly rifaximin, but also Erthromycin, Clarothromycin, and Levaquin.

I'll keep you apprised of my PT progress and details, but I am also going to insist on some more positive testing to diagnose (or not) this IC. I don't look forward to being diagnosed with IC, but I need answers.

Thanks,

Rich from Indiana

[stacyY]

Hi Rich;
Thanks for the info also. I also have IBS to. But i have it with constipation. The antibotic i take is just for the bladder its called Macrodantin, an i take 100mg. I Was also afraid to be on an antibiotic fo such along time 6 months is so long! but so far no problems.
Ohh yeah about the cranberry juice, its got a lot of acid! if youjust have a regular urinry track infection, then it works great. But if it is IC, You have to stay away from acidic things. And cranberry is a big nono! alng with orange jucie and lemon and lime. I personly do not have much food restrictions, but i cant have any thing like orange juice, and deffinatly not the cranberry juice.
The prelife is a good thing to try out for some it makes a big differance.
Good luck, and i hope the pt wilhelp things for you.
stacy

[funkyic]

Back from Cleveland Clinic

Hello again everyone,

I am back from spending a week at Cleveland Clinic doing a lot of physical therapy. My therapist, Betsy, is very good.

The PT does help. My pain is significantly reduced or even gone following the therapy. It does come back after a while because I have a bad habit of tensing my pelvic floor. My PT is training to teach me to not do this using trigger point release and exercises (mostly stretching). Most of my pain is on the right side of my body. Weird.

The PT is rather invasive as it involved an extended DRE. Trigger points within the pelvic floor are pressed until the muscle loosens. I can feel this happening. External trigger points and muscles are also worked.

I know this is not the quick fix, but it is also the least invasive and very holistic. Besides, my condition did not occur overnight. It has been progressive for about a year.

I do feel like this is my best shot at ridding myself of the pain. I am tired of medications and all their side effects. I just have to stay committed to the PT and exercises.

Regards,

Rich

[leelee88]

Just wanted to say I think these girlys have answered your questions pretty well

[jen74]

Hey Funkyic,
Sorry you are dealing with all this. I am glad the PT seems to be helping you. I hear Cleveland Clinic is suppose to be one of the best. I have a friend who her daughter goes there for her severe health issues she has and says they are the best. ( Geez, I wish I lived near cleveland )
I read about you getting the night sweats, I get the cold sweats actually. I can be in bed and freezing to death with awful chills, and yet I am all damp all over. Really weird.
Anyhow, Glad you found this site as there are lots of wonderful people on here. Hope you continue to get better.
Jen

[funkyic]

Night Sweats

Hi Jen,

Actually, mine are cold sweats too. I wake up dripping in cold sweat. I towel myself off and try to go back to sleep.

Rich

[vm]

That is great that the PT seems to be helping relieve your symptoms. Awesome. I hope it continues to helps more and more.

I just had to come read your thread when I saw your username - it is GREAT!

[L. Thomas]

Wow, the responses are very quick and thorough. I appreciate all of you!

When I was diagnosed with IC I couldn't even pronounce the word. I had no idea what the symptoms were. I just happened to be referred to a urogynecologist by my gynecologist. He just happened to be a specialist in IC.

I didn't have any of the symptoms of IC before extensive pelvic reconstruction. Very soon after surgery I began to show the symptoms, but it started with the "walking musical farts".

My gyn thought he had caused the problems so he referred me to someone that he felt could solve the problem or could refer me to someone who could.

I think most of the experiences with IC are just glazed over and that leaves most of us needing to feel we are not insane but IC normal. You will always find support here.

[jen74]

Hey Rich.
Wow, I thought I was the only one who had those cold sweats. I wonder what causes that. Maybe it is just the immune system doing it. Anyhow, sorry to hear you have to deal with that too. I guess though out of all my symptoms, that one I can tolerate. It is the severe relentless pain that I have all the time That I cant deal with.
Anyhow, I hope that with the PT you get better and better. I am glad you found this site as it was a godsend for me.
Jen

[funkyic]

Cold Night Sweats, Bladder Retraining, etc.

Not sure what causes the cold night sweats. Could be that the body is just worn down and it causes some sort of hormonal imbalance. When I am worn out, lots of strange things happen with me.

My doctor started me on Elavil a few days ago (low dose) and my night sweats seem to be resolving. I don't know if this is the placebo effect or if it is really doing something. My guess is that is makes me drowsy (taken a couple hours before bed time) and it allows me to get the deep, recuperative sleep that I have been lacking for so long.

But through all of this, I am determined to the balance in my life that helps me to help myself become as healthy as I can be. I think I have let life run me over for the past year and now it is my turn to shine.

And yes, you guys are all great. It is nice to know I am not alone. Because when I am at work, I do feel I am the only one with this problem. Mr problem seems to be exacerbated by urinating in public, like in a line of urinals. I am envious of those around me who can urinate with high pressure and infrequently too. I am always the first to go the the restroom and the last to leave. Not fun.

How does everyone feel about bladder re-training? Is it healthy to resists the burn to urinate and only go by the clock? Can that make matters worse?

Rich