Interstitial cystitis and crohns disease

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Lasardo
Regular Member


Date Joined Jan 2011
Total Posts : 355
   Posted 12/13/2011 12:07 AM (GMT -6)   
I have been diagnosed with interstitial cystitis for a few years now and know it can happen with crohns disease. The intestines are flared and the bladder eventually succumbs. I just wondered if anyone else has been diagnosed with I.c. ? Would be nice to compare notes.
Crohns dx,Pelvic Floor Tension,Pelvic Adhesive dx,interstitial cystitis,ileostomy,chronic pain,arthritis,fibromyalgia,severe 42 degree scoliosis,degenerative disc dx,neurological impingement,pelvic tilt and complete loss of neck curve. 4th degree tear during childbirth with 13 reconstructive surgeries (including fistulas) resulting in chronic pelvic pain and an ileostomy. Bp and panic attacks.

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2122
   Posted 12/13/2011 12:56 AM (GMT -6)   
I've had IC since I was a small child. I can remember at recess in 1st grade running back and forth from the bathroom. Thinking I really had to pee, but only a few drops and I would have such pain and burning. For years I went through tons of doctors, they always thought bladder infections, but it always came back negative. I finally had one that said it was IC, and would give me Pyridium when it acted up. Having that stuff be over the counter was a nice thing to have happen!

This was WAY before my Crohn's ever started up. So I have to wonder if it was some kind of pre-cursor for me. I still get flare ups of it sometimes. Not usually with my Crohn's flare ups though. Usually around the time I'm supposed to have a period it acts up.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.

Calypso185
Regular Member


Date Joined Jun 2011
Total Posts : 40
   Posted 12/13/2011 6:33 AM (GMT -6)   

I had recurrant UTI's before my Crohn's dx (they thought I just had IBS at the time) since 2009. But I think all the stupid antibiotics made my Crohn's go into a permanent flare!

I haven't had a UTI since March but I have had constant feelings of one! My urologist says it could be from my inflammed intestines pushing my bladder- but basically said, "such is life, I don't want to see you back for a year!". UGH! Thus, my MD referred me elsewhere- because she agreed my symptoms are abnormal for a 26yr old with Crohn's! I have an appointment with a locally-known urogynocologist that can help me I hope! My MD gave me samples of Vesicare to try, but I am holding off until my next appointment and do my urinary logs, etc.

It is bad enough Crohn's SUCKS but everything else makes life unbearable sometimes! :(

This board is a blessin. When I think that I am a freak and none of my doctors know what is wrong- it is nice to know there are others out there dealing with the same symptoms and frustrations. xoxo!!!!!!!!

-Calypso

Lasardo
Regular Member


Date Joined Jan 2011
Total Posts : 355
   Posted 12/17/2011 12:37 AM (GMT -6)   
Calypso,
Has the doctor given you elmiron before? It is specific ally for I.c. It helps by lowering the inflammation surrounding the bladder. It does help, better than nothing. Right? Good luck,
Les
Crohns dx,Pelvic Floor Tension,Pelvic Adhesive dx,interstitial cystitis,ileostomy,chronic pain,arthritis,fibromyalgia,severe 42 degree scoliosis,degenerative disc dx,neurological impingement,pelvic tilt and complete loss of neck curve. 4th degree tear during childbirth with 13 reconstructive surgeries (including fistulas) resulting in chronic pelvic pain and an ileostomy. Bp and panic attacks.

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3926
   Posted 12/17/2011 6:58 PM (GMT -6)   
Yeah, I had a couple episodes of this my Snior year in college, before I knew what it was. I also had some episodes the year I was OFFICIALLY diagnosed with CD.
Troublesome, but the Kidneystones are much worse. Plus, they can cause this when they pass. IME. <Sigh>

Matthew

RxCrohnie
Regular Member


Date Joined Sep 2006
Total Posts : 145
   Posted 12/19/2011 9:50 PM (GMT -6)   
I was diagnosed with Crohns about 7 years before getting my IC diagnosis. I was having symptoms of pressure and burning. The gyno diagnosed me but now I am seeing a wonderful urologist. I couldn't take Elmirion because it hurt my stomach. I am on Zyrtec, gabapentin and cymbalta. He also gives my bladder instillations of bicarb,heparin,and lidocaine. I do the instillations as needed. I didn't have any health problems until diagnosed with crohns then everything hit. I am flaring now and my IC is now starting to flare a bit. They diagnosed me with KCl test but urologist said this doesn't exactly mean someone has it??

OhCr@p!
Regular Member


Date Joined Feb 2011
Total Posts : 72
   Posted 12/20/2011 3:57 PM (GMT -6)   
Hello, I have had IC for 8 years. I take Elmiron, anti-depressant & pain medication. I've tried every possible oral medication and then instillations, injections, urethra dilation surgery, cystoscopy with hydrodistension, etc. I have a couple of bladder issues - urine retention, hunner's (bleeding) ulcers, frequent infections, and IC.

This past year I've been really, really sick with constant diarrhea and bowel incontinence. I've had every possible bowel test. The drs. always see inflammation and bleeding inside my colon (patchy - meaning potential crohns). However so far my biopsies have come back negative for CD, so my current diagnosis is 'colitis.' I need B12 and potassium supplements, have been hospitalized for a week, and have had several trips to the ER and countless doctors.

This past month I had a sacral nerve stimulator implanted. It is helping with the urine retention. It also is FDA approved for fecal incontinence, and although it's helped for me in that area, it hasn't resolved the issue. The consistency of my stool has changed - from liquid D to loose. But I still have bladder urgency, bladder pain, stool urgency, stool incontinence and abdominal pain.

I definitely think the two (bladder and bowel) are related. I will feel my bladder spasming, and then soon after I will have D.

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3926
   Posted 12/20/2011 6:25 PM (GMT -6)   
 
 
      Yes, because of the proximity, the bowels definitely effect the bladder. And vice versa. If your male, go ahead & add prostate to that as well.
     This DD has more ways to kick you when your down than I have words for..
 
     Sincerely,
     Matthew
 

Lasardo
Regular Member


Date Joined Jan 2011
Total Posts : 355
   Posted 12/20/2011 6:45 PM (GMT -6)   
Ohcr@p,
I love that..oh cr@p..makes me giggle, anyway I was diagnosed with crohns disease and later had a colonoscopy and the doctor said I didn't have it. After incontinence, diapers, endless surgeries, colostomy bags, i.c. Pelvic floor tension, pelvic adhesions, a hystorectomy, malabsorption, countless hospitalizations for obstructions , g.i. Bleeds etc and etc..I was lost. I finally met a g.i. That stated that sometimes the testing is not always accurate. It sounds like to me you have gone through quite a bit and to not have a diagnosis must be so frustrating.
My question to you is does the nerve stimulator help with the pain? I ask because I have a lot of pain and have to depend on a lot of pain medication. I would love an alternative and it sounds like we have a lot of the same issues..
Crohns dx,Pelvic Floor Tension,Pelvic Adhesive dx,interstitial cystitis,ileostomy,chronic pain,arthritis,fibromyalgia,severe 42 degree scoliosis,degenerative disc dx,neurological impingement,pelvic tilt and complete loss of neck curve. 4th degree tear during childbirth with 13 reconstructive surgeries (including fistulas) resulting in chronic pelvic pain and an ileostomy. Bp and panic attacks.
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