If our inner protective bladder lining is compromised..

[maryb67]

due to IC ,, are we reabsorbing the toxins from our urine back into our blood stream and tissues leaching from the areas where our protective bladder liner is damaged? Can't this make us systemically ill? Thanks for any info on that thought,,Mary

[K9wife]

Hmmmmmmm......! Good question!

[nss]

Interesting question. :)

[ICLori]

That is a really good question. Maybe it's not really seeping into our bloodstreams in very large quantities, maybe we are okay because of that....I know that surely some of the contaminates must make contact with blood vessels, but maybe it's on a small enough scale, you know, that it doesn't make a big difference except to cause us pain....hmmmm....good question!

Blessings,
Lori

[coopsmom]

i will run that question by my uro i have an appointment tomorrow. that is if i can remember. and i can remember to log back on my email is vickifrye@comcast.net if anyone can email me and remind me if i asked.

[maryb67]

I just wonder this because there are times I get very sick, swollen, bloated, water weight gain (7 lbs, or more) have stiff joints, itchy skin, etc.. I feel like I'm on toxic overload no matter I do, diet, excersize medicine nothing (and I have tried EVERYTHING, (chiropractic, juice fasts, personal trainer) seems to help. Now I feel hopeful to see if now that I have the Elmiron and follow the diet (I had no clue aobut IC until the Uro last week) if my bladder liner repairs, the toxic waste will stop making me sick.. :mad:

[di52]

When the dr. knicked my bladder I asked him if toxins were in me and he said urine is sterile. When another dr. knicked my mother's bowel intestines years ago, now that was a problem, she had to be fed through an IV for an entire summer so her intestine can heal. Just a thought...I'd ask the dr. though. :hmm:

[di52]

You sound like you may need a colon cleanse? My dr. told me to get it. I still have not done it yet. I want to but will not do anything till I get back from vacation.

Hope you feel better soon.
Dianne

[Trishann]

I was told urine is sterile too. Are the kidneys not working right, so that toxins are not being filter by the kidneys and toxin destroying our bladder? Or is it just the bladder? I don't think doctors have the answers, that is scary.

[maryb67]

I wish it were as simple as a colon cleanse as I mentioned I have tried everything, including that in the past and it made me worse. With my auto imune disease, I am not able to use products that contain fiber because it scratches the inside of my intestines and cause my immune system to overreact, swell and even block off my intestine, I can only use Miralax per my GI Dr, who I see on a regular basis...

Also, I understand urine is sterile, that means it doesn't contain bacteria from outside your body,, but it contains waste products, stuff that needs to be removed from your body to be healthy, or else why is it neccesary to filter it out if it's fine to be in your bloodstream? ? I just wonder if over time repeated exposure of it getting reabsorbed back into the blood stream through the rough patches on the lining is a problem, for me anyway...

I just will be very curious to see if the Elmiron and diet help improve this situation for me. I know one thing, with in 3 days of having the cysto, my body swelled up 7 pounds, I started bleeding (I had a hysterectomy 2 yrs ago, so no cycle) and every day since it gets worse, so I think the camera/scope must have aggravated me into a flare and now I am positive that it has been IC plaguing me the last 3 years..

[Trishann]

Sorry, I really don't know. I hope you can get help so you can feel better. I know you must be in pain. Keep seeking till you get the answer.

Trishann

[maryb67]

That's OK Trishann! I was really just thinking out loud kinda. I guess what was trying to say to begin with is that I look forward to seeing if when my bladder heals, if any of these other problems go away too..I really feel fortunate that I am getting treated for IC, I really do,,I just started Elmiron last week, so I'm just in the early stage. I was surprised that the cysto threw me backwards into a flare, but that's OK,, it was bound to happen again anyways, at least I have the medicine..

[creatingkarma]

I think this is a very good question & have often wondered this myself. I wish someone knew the answer.

[di52]

The elmiron is really helping me...only have symptoms of I C since mid March. Went to dr. and he gave me elmiron and began taking it right away. So I've been on it since late March. I can see it is already helping. I just have the burning feeling down there all the time. Wish that would go away. I cringe at the thought of sex...I really need something to help with the burning. I'm going to the uro today. I don't even know he knows that is part of IC! I am voiding a lot less now. But waiting to go into remission.

Dianne
2 elmiron twice daily
butterbur extract 3 a day
gotu kola twice a day
ditropan xl one nightly
following IC diet

[glenda]

I love this question! It's a great one. I feel the same way, Mary. I feel like my whole system is affected, and this could possibly explain it. Thanks for the thought, it makes a lot of sense to me.

You have itchy skin too?

[maryb67]

Glenda, Yes I have these flares, that among a boat load of other miserable things, include an incredible bout of hours on end of itchiness on my arms and legs, when it was really bad, my torso was involved. that thus far has been contributed to a generalized non specific auto immune problem because certain auto immune inflammation bloodmarkers went very high, but they were not postive for Lupus or Chrohns or RA, the symptoms are kind of a mish mosh of all 3, so they call it UCTD..(unspecified connective tissue disease). I saw a very nice derm. and I see my really cool rheumotologist. They help me get through what the derm diagnosed as the "internal hives" (I had a full blown attack in front of the derm, he decided to scratch my arm with his fingernail to see what would happened and OMG my whole arm swelled up! LOL, his eyes were as big as saucers, but he saw the whole thing from start to finish, so thank God, he understands and told my rheum!) even though they couldn't really figure out what the trigger was, he gave me atarax and allegra. I don't care what any Dr says about urine being "Sterile" it's still a waste product that is meant to be removed, and it just makes sense to me that if waste keeps leaking back in to me from a bad patch in my bladder lining, it might be whats been making me sick. Plus I want to add that perhaps this has been going for many years building up unbeknownst to me, and others may a lot younger than me (I am 39,but I've had pain "down there" for many years,and assumed it was "girl problems")not be at the same stage, and been getting treatment sooner. So they may not feel the same way. I may also have been chasing after the wrong kinds of Dr's to help me, because I had been focusing on thinking it was GI related, because it feels crampy..lol SO anyway, as I said before, I really didn't post this as a complaining thing, it's positive, thing, I am excited to see if I may have found the thing.. :)

[glenda]

Mary,

I really didn't post this as a complaining thing, it's positive, thing,

I didn't feel that you were complaining. I see this as a very positive observation, or idea.

I feel like I've been chasing after the wrong specialists and the wrong speculations for a long time, too. For instance, I always felt like I had something wrong with my intestines, but that's one I didn't seek medical attention for... I just lived with it. But now, I look at it with expanded suspicion.

i sent you a pm :)

[icnmgrjill]

If you read Dr. Theoharides last guest lecture, you'll see that you're kind of looking at this backwards. It's not the toxins going into the bloodstream... but the local blood vessels actually opening up to fight an apparent toxin.

The way I understand it is that when the mucus is damaged, urinary toxins reach the cells beneath. What happens then is that the cells "sense" this foreign invader... and then call upon the lymphocytes to come battle the invader. Thus, white blood cells congregate at the cells where the capillary opens up to let them out into the cell to fight the battle. Thus... the little broken blood vessels are actually our blood vessels opening up to let the white blood cells go fight the toxin.

The key toxin is urine is, according to Dr. Parsons, potassium. When potassium (K+) finds those tender tissues it, as a positive ion (like Sodium NA+), triggers the nerves and, in general, creates mayhem at the cellular level and, ultimately inflammation. But, I don't see the potassium going, at any great speed, into the blood vessels.

Just my two cents. It's a good question!

Jill

[ICLori]

Wow, Jill, thanks for this explanation! That makes a lot of sense now. Now I understand better how IC causes the inflammation and the scarring! Too bad that there wasn't some supplement we could take that could bind with potassium being excreted (but yet leave the potassium in our bloodstream alone, to be used by the body) so that it wouldn't irritate the tissues so much.

Blessings,
Lori

[di52]

HI Jill!
I'm sorry...I'm just not getting all of that. But maybe you can explain what is written on my pathology report better. I won't hold you to anything..i'm just trying to better understand it.
It reads: bladder biopsies reveal that their surfaces are covered by low regular appearing transitional eptihelium. The supporting stroma is edematous with light diffuse infiltrates of lymphocytes and plasma cells.

Basically, the dr. said the dx on the pathology report is chronic cystitis. He said only the top layer of the bladder wall was inflammed. He said IC goes deeper. He told me I can go off the elmiron and just try the diet. We decided to wait till June before going off anything because we are going on vacation. He said it is not IC...I asked if he was sure...and he said how sure is sure? Then he said he is almost positive. I just don't know if I trust this guy altogether...I'm going for a second opinion. He didn't read the above to me or explain it other than to say I don't have IC. Can you make any of it out? You seem like you understand all this better than I. I am not going to hold you to anything...please understand I just thought you'd understand it better than I and can explain it a little to me. It's ok, if you don't want to.
Thanks, Dianne