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LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 11/20/2009 2:16 PM (GMT -7)   
First of all, thank you to everyone who has been giving me advice throughout the whole *possible* UTI scenario and getting appointments!

I went in to see a urologist today since my GI office was kind enough to call a few days ago.
I had a scope inserted, not fun, really painful, and I prefer a colonoscopy in all honesty.

BUT, I have been officially diagnosed! Interstitial Cystitis/Painful Bladder Syndrome. I had read up on it, but the way this doctor described it to me it sounded exactly like Crohn's except in the opposite area. Mucosal lining disappears, bladder wall becomes irritated, constant feeling with burning/pain like you have to urinate (as opposed to BMs and cramps), barely anything comes out etc. etc.

He's put me on two different kinds of medication. One turns your urine blue...interesting. A beautiful ocean in my latrine.

In all seriousness though, it's so strange to be diagnosed with two things that are so close together physically and so similar in symptoms. It makes me wonder if it could be connected in any way. No known cause or cure either.

The only problem is that I have to change my diet again, and that it is in complete contradiction to the SCD e.g. no yogurt, aged cheeses, or eggs, but I think I'll stick with those and avoid some of the more obvious irritants like I have been (coke, coffee, etc.).

Anyway, thank you all again. I really do appreciate your kind words and advice. It's helped me through. As usual!
Diagnosed with Crohn's in May of 2008.
Currently taking: Prednisone, pentasa, omeprazole, and humira. Using probiotics and a multivitamin.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/20/2009 2:35 PM (GMT -7)   
(((LMills)))

Glad to hear you have a diagnosis at last. Here's to brighter days ahead.

Is this a lifelong, chronic disease, LMills, or something that can be cured?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 11/20/2009 3:33 PM (GMT -7)   
Thank you Ivy :) I certainly hope so!!

But no, there is no cure. It's a lifelong thing that has its really bad days and then nonexistent ones as well.

My main problem right now is that I don't want to use the restroom...something must have gotten scraped in the scope procedure because it's bleeding slightly, and it stings when urine passes. No fun! But hopefully it heals soon.
Diagnosed with Crohn's in May of 2008.
Currently taking: Prednisone, pentasa, omeprazole, and humira. Using probiotics and a multivitamin.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/20/2009 3:51 PM (GMT -7)   

AzJohnny
Regular Member


Date Joined Sep 2006
Total Posts : 171
   Posted 11/20/2009 4:59 PM (GMT -7)   
Bonnie,

I've had this chronically since I was 8 yrs old (I'm 56 now). Cranberry juice or the smooth cranberry sauce is indeed the miracle food for this. At the first sign of symptoms I use the magic berry and it's gone in 30 min. I would recommend you include cranberries in your diet every day along with the meds until it clears up. The worst food for this that I have found is tea. One cup of tea or one glass of iced tea can trigger a flare (of UTI not Crohn's).

I'm sure you'll like to know that this problem has been only a minor irritant to me, in fact if I remember to eat of the magic berry at least once a month, I forget I have it. Hopefully the same will be true for you.

BTW that med sounds like the stuff a friend of mine was selling to the girls in his college as a pregnancy test. He told them if their urine turned blue they were pregnant. Apparently he created a minor riot.
AzJohnny
 
I feel a whole lot more the way I do now than I did a little while ago.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 11/20/2009 10:49 PM (GMT -7)   
AZJohnny-Can you tell me a little bit more about your case? Does it ever seem affected by Crohn's or vice versa?

I'm having to change a lot in my diet...I was told to avoid cranberry juice though. But I've heard it go both ways so it's really confusing right now!

I'm just glad it's not a UTI...I don't think I can take anymore antibiotics.
Diagnosed with Crohn's in May of 2008.
Currently taking: Prednisone, pentasa, omeprazole, and humira. Using probiotics and a multivitamin.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/21/2009 8:57 AM (GMT -7)   
I thought, and I may be wrong, that this is a side issue related to Crohns. I am pretty sure we have more members with this. Maybe modify your subject line and put that in it, to get more responses???? I sure hope the new meds get you feeling better again. I love the picture of the blue water in your toilet:) I have had the orange pee from meds, but think blue sounds much prettier:)

Feel better!

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

AzJohnny
Regular Member


Date Joined Sep 2006
Total Posts : 171
   Posted 11/21/2009 7:52 PM (GMT -7)   
LMills, I don't know for sure what mine is and I don't want a scope to find out, it sounds too painful. If I had to guess though I would say UTI.

Are you recovering from that scope yet? It sounded terrible. I hope you get both conditions into remission real soon.
AzJohnny


I feel a whole lot more the way I do now than I did a little while ago.
Crohn's Dx April 2006. Pentasa and Entocort EC


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 11/22/2009 6:14 AM (GMT -7)   
I have read people on the Kidney Disease and Disorder forum who are dealing with this same issue. I'm sure they would share their experiences with you.
Wishing you feel bettery very soon.

Elizabeth
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, Endocort, Prednisone, Imuran, Folic acid, and Enalapril.
 


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 11/22/2009 10:10 AM (GMT -7)   
Nanners-I read the same thing about them being interconnected, but everyone kept mentioning IBS instead of IBD. I think there is a connection though since it's basically the same thing...losing mucosal lining etc...I've had the orange too by the way!! I was taking AZO until I went in for the urology appointment.

AzJohnny-The scope was extremely painful, and the scrape from it made urinating pretty painful for a day or two afterward (some bleeding, but it's gone). BUT! It's worth it to get it done, have a diagnosis, and never have to do it again.

Thank you guys, by the way :)

The medicine does help. The only problems now are that some of the IC medicine causes GI upset, and the diet to help IC is the diet to make IBD worse. I'm sure it will work out fine though.

I had to be on two flights yesterday so...I couldn't get to the bathroom. Really, really uncomfortable, but today is so much better. It feels completely different.

On a side note...made it through the flight. Xanax completely knocked me out so by the time I woke up it was 20 minutes before we were set to land.
Diagnosed with Crohn's in May of 2008.
Currently taking: Prednisone, pentasa, omeprazole, and humira. Using probiotics and a multivitamin.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 11/24/2009 7:23 PM (GMT -7)   
Good luck Sweetie! Hang in there and be strong.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

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