Please Pray For Me Keep Prayers Coming Test Was Done update pg18

[HennysMom]

Mark,

I've read your trials and tribulations with your kidneys/bladder and I'm curious - have you ever been checked for a bladder disease called Interstitial Cystitis (IC)? You have all the classic signs of it, including urinating blood. If you have a urologist, please ask him/her to perform the test to rule out IC as a possible cause. It can be either Ulcerative or Non-Ulcerative IC - and its very painful and debilitating. Unless they are specifically looking for it, they will miss it. It affects more women than men, (which is why they miss it in men and usually go with prostate issues) but men do get it.

How do I know what this debilitating disease is? Because I've had it for nearly 13 years now and trust me...its horrible and can wreak havoc on a body.

If you have any questions, please go here http://www.ic-network.org and read up, there are men on this site as well.

Good luck to you and I pray you dont have IC.

Deb

 

[I have WHAT in my yard?]

I have IC too, but in my case it isn't really too bad. It was awful for a year or so, but then I finally figured out some dietary things that were exacerbating it. Cut it right out and I haven't had much trouble with it since really.

Henny's right, you might want to check it out.

 

[SpottedCrow]

Hugs and prayers...
How'd you make out at the doctor's?

 

[BirdBoy88]

Update you all

Well the docs called today and told my mom that to make another apt to find out the results in a month!!!!!

i yelled in the background HECK NO! so my mom is coming back tomorrow and calling back and trying to make another apt like for next week!

but to be honest i am not even stressing anymore about .... it's weird like most would be going crazy right now wondering what the results are but to be honest the last few days i haven't been thinking about it that much lol .. i guess it will hit me the day before i go

and yes i will ask my doctor about IC thank you so much for telling me about that it really sounds like me i have been having this problem since i was about 16 years old

Thank you all so much again for your wonder advice thoughts and prayers and just kindness helping me get through this ..... you all are all i have and it means so much to me

!!!!!!


Also wanted to add i can urinate normally again!

i sure missed it LOL

but i am having signs show that i may have UTI ... the last 2 days i have been having all the normal signs of it

 

[ShadyGlade]

Hang in there. You'll stay in our thoughts & prayers.

 

[HennysMom]

Quote:
Mark -

IC can cause all of the things you're describing and been through. Trouble urinating, blood in urine (even urinating what appears to be pure blood), the feeling of having to go constantly, a feeling of peeing razor blades and/or glass, stomach pains, back pain, abdominal pain (and severe enough to where you cannot walk, sit or stand), it also is the number one mimic of a UTI. Its what most IC sufferers think they have continually and what drs continually treat for, even though they dont have one.

I suggest being tested. you just had a cystoscopy done - do you know if they did a hydrodistention with that? Its where they fill up your bladder with saline to look for pinpoint petechial hemorages, its a classic sign for IC. They do have other means to test now a days, but a cysto with a hydro is the BEST method to confirm IC out there. They can also perform a PST test.. very simple but not as accurate as a cysto with hydro, but it will show markers. Also many IC patients have urethral constriction and spasms, which adds to the pain of it all (the urethra can be dialated with physical therapy, but should never be cut to open it further due to scar tissue...ever). Most IC patients also have PFD (Pelvic floor disfunction) which is a vicious cycle of pushing and locking up of the pelvic muscles...they need to be retrained, again through physical thereapy. It takes time, all of it does.

In the mean time, they can do several tests on your urine to check for markers (mast cells and other cells) that only IC patients have. Think of mast cells like allergic reactions in your bladder. If you can take a small daily dose of Benedryl (like a childs chewable), see how you feel...it does help by blocking the histamine thats released in the bladder. Also - if you can, stay away from acidic foods and soda, coffee, etc. They are killer on your bladder and any red/orange dyes. Try to take baths with epsom salt and baking soda (it helps). Try to eat 2 Tums a day (the baking soda in them help de-acidify your urine - which IC patients have very high acid - it burns their bladders its so high). If all else fails and the pain becomes so great - and you can stomach it - you can mix 1 teaspoon of baking soda in an 8 ounce glass of water and drink it, but only if you dont have high blood pressure as it will make it rise if you do. I cannot stomach drinking it so I can do the Tums (easier) and you get added calcium. AZO tablets over the counter and Uristat (yep, the stuff that turns your urine orange) work pretty good for helping with burning as well. AVOID CRANBERRY JUICE AT ALL COSTS! its a myth that it will help...it actually damages your bladder if you have IC... and since you dont know for sure yet... dont drink it, ever. There are a ton of meds out there that can help as well - from homepathic to modern medicines (been there, done them all) so..you have alot of choices.

Please get back with your urologist as soon as possible, if you dont have a urologist - get one. IC is very complicated and no 2 patients are alike. When men get it, its even worse because its so uncommon in them vs. a woman. And above all else - do not let ANYONE tell you its in your head because its not, trust me. I've been through every treatment known and unfortunately...I've got such a bad case of it, nothing works for me, but there are thousands of others that do not have it as bad as I do (like I-Have-What posted..she has it and apparently can control it with diet

thats awesome!) - so dont dispair if you do have it. There is light at the end of the tunnel for many.

Please make sure you get checked for it, I know the cysto was unpleasant but if you tell your doctor to do a heparin/marcaine/lidocaine instill before, during and then immediately after following up with marcaine again, you will feel so much better should they have to do another one with a hydro/cysto combo. You wont have all that pain/burning when you wake up.

Again, all of the above is to be done only if you have IC - do not do it if you dont have a confirmed diagnosis. Of course, the first thing you should do before getting to see the doctor is modify your diet..write down everything you eat and pay attention to see what foods irritate you. You'll be surprised how many do. Go from there, keep a daily journal of how you're feeling, how much you go, what you've eaten, if you hurt after eating certain foods/drinks, etc and present it to your urologist when you go, that way you'll be ahead of the game.

I wish you all the best.

 

[English Chick]

Mark.... I agree with everything Hennysmom says....... I cannot add to it.......

to you.................

 

[sred98]

Mark, thanks for the update! Definitely check about the IC. Either you or your mom call the dr. and see if the discomfort you are having now could be related to the procedure they did. You might still be sore from that.

Keep us posted. Glad to hear you're "passing your waters" easier!

Shelly

 

[BirdBoy88]

Thanks y'all

i will most Definitely talk to my doctor/urologist about IC because it does sound alot like what i have been going through all these years

i find out my results of the cystoscopy next Monday so keep prayers coming!

thank you all so much for all your info and just everything!

!!!!!!!!!!!!!!!!!!!!