Interstitial cystitis and crohns disease

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Lasardo
Regular Member


Date Joined Jan 2011
Total Posts : 361
   Posted 12/13/2011 1:07 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 : 2193
   Posted 12/13/2011 1:56 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 7:33 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 : 361
   Posted 12/17/2011 1:37 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 7:58 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 10:50 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 4:57 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 7:25 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 : 361
   Posted 12/20/2011 7:45 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.

gdaughters2
New Member


Date Joined Apr 2014
Total Posts : 1
   Posted 4/22/2014 8:21 PM (GMT -6)   
Lasardo said...
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.


Laserdo I was diagnosed with Crohn's Disease at 17 and had surgery at 18. I have lived a very healthy life since bearing four children. I am 63 and have just been diagnosed with IC. I read they were connected but didn't know till I read inflammation of the intestines can affect the bladder. I never thought I'd have anything later that connected my past but see it now. Thank you for your post

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2193
   Posted 4/22/2014 9:48 PM (GMT -6)   
I've had IC since I was about 6 years old, so yes you're not alone there! Suffered with that long before I had Crohn's disease.
~Jennifer

Diagnosed with Crohn's Disease in 2006, but suffering since 1997.
Currently taking:
Cimzia
Questran
Failed: Humira and Imuran (caused pancreatitis)

teragram
Veteran Member


Date Joined May 2013
Total Posts : 2432
   Posted 4/22/2014 11:59 PM (GMT -6)   
I had IC, and got a lot better with Elmiron. Now, I have some episodes of urinary incontinence, which doctors have told me results from IC, but I think it also correlates with my Lyme flares.

Margaret
HELLO!! :) :)

Margaret, 53, Lyme, relapsing remitting c. diff., complete thyroidectomy, remote breast cancer, Interstitial Cystitis, Babs, Bart, Fibromylagia, Immuneglobulin Deficiency, depression, asthma and allergies, migraines, myoclonous and remote seizures, orthostatic hypotension and dysautonomia

Medication, herbs, vitamins, probiotics, Cowden protocol for now; might change.

guyfeelsgood
Regular Member


Date Joined Apr 2014
Total Posts : 161
   Posted 4/23/2014 8:32 AM (GMT -6)   
I always like to jump in and many are negative to my opinions ----but I voice some things too

If you follow and read doug kauffman and his realization and thoughts from medical studies and history books, you have to wonder. as I read more and more and hear everyones symptoms I just keep coming back to that word no one wants to hear..
this is a link from the DR OZ show which talks about what everyone here is talking about...
http://www.doctoroz.com/videos/yeast-hidden-cause-your-exhaustion

When you read up on the guy who came up with the MALE prostate test Dr. Richard Ablin, who discovered the PSA test, reveals for the first time, that the PSA test was never a prostate cancer test. yet FDA ran with it and its standard today... Many who have a high PSA if given diflucan and nystatin there PSA lowers as well eating low carb

I scan and read ( troll over everyones posts everywhere) when you look up in one of these posts HERE a female says when her period comes ( a time when yeast is more active) her symptoms get worse..

Adding in many symptoms and then looking at the intestines and bladder i just scratch my head

When you look at what matt says
****Yes, because of the proximity, the bowels definitely effect the bladder. And vice versa.

when you look at every symptom as a whole... it has to make you wonder

guyfeelsgood
Regular Member


Date Joined Apr 2014
Total Posts : 161
   Posted 4/23/2014 10:51 AM (GMT -6)   
when you look at the symptoms here -- everyone has an issue with urine and gut in this post

why I always (jump post to post)pointing to this test being so IMPORTANT.. one the OAT test
Organic Acids Test (OAT) - Nutritional & Metabolic Profile.. (A URINE TEST)
This test looks for makers that No hospital or doctors lab looks at( an advanced test). it looks at 77 metoblic markers
from YEAST by products , bone, vitamins , bacteria.
this is a unique test as there looking at the byproducts different yeasts and bacteria produce... they make poisons etc
PLEASE LOOK at the sample report to the right in the link....
http://www.greatplainslaboratory.com/home/eng/full_oat.asp

The other test is the COMP stool - where this lab looks at 92 types of bacteria 48 yeasts 22 parasites...
the avg hospital test looks at a hand full... of bad bacteria.. handful of parasites and no yeast.
http://www.greatplainslaboratory.com/home/eng/stool.asp

By doing these types of tests you can open that black hole and peak in as to maybe why you have all these sort of things... If you low on all good bacteria thats a problem.. if your yeast is out the roof... thats a problem.. you may have some bad BAD strains of bacteria

Many have jumped on me.... but I like to point out theres several tests out there. when there used in conjunction you start to see alot more. on another post I was yelled at about the IBD expanded panel test..( which is 5 antibodies) not the 2 antibody test IBD panel we all seem to get.. that person jumped on me about it. If you have problems there and you peal back the layer and look here and other places its like picking up a dirty carpet and seeing the bugs crawling around.. I do not want to degrade any one or cause negativity , just pointing out some facts and things ive found and seen across two years of testing

I do not say or ever advise not to take meds... I just like to point out that in many cases they help but there also turning off the immune system which really isnt getting to the cause. your powering off the circuit breaker to an extent


when i put all these tests in the mix( together .... for me it made sense... why my urine felt acidy.. i had stomach pains... some acid reflux, crohns antibodies, an abscess and then fistula. I had migraines, joint pain, the shakes , bad sleep.. loose stools (hard as a rock ones too) side pain , back pain... osteoporosis.

two years later , I have nothing but one thing osteoporsis... and im hunting that down the oat test looks at bone metabolites...1 years ago I was at 1035 today they are climbing and at 1702

Alyssa95
New Member


Date Joined Aug 2014
Total Posts : 1
   Posted 8/9/2014 11:43 PM (GMT -6)   
I was diagnosed with Crohn's Disease about 10 years ago, at the age of ten. It took months of suffering and pain and doctor visits before someone decided to do there job and actually figure out what was wrong. I weighed about 40 pounds, I was pale as a ghost, and of course had all of the other major symptoms of Crohn's Disease. So despite this, doctor visit after doctor visit, each and everyone had the nerve to tell me I was either making it up or it was just the stomach flu and there was nothing they could do. So during these past 10 years I've had ulcers, flare-ups, multiple medication changes because the medicine just wasn't working, childhood seizures, depression, several hospitalizations, I get the flu every year (even after getting the flu shot), I constantly feel sleep deprived, I've had C Diff, and now I believe to have IC. I've had the symptoms for about 3 years but of course my clueless doctors don't know what to do or just don't have the time to properly diagnose it or even order the tests to determine what's going on. Stress seems to trigger my bladder pain the most and some foods and my period will trigger it as well. So since I'm a full time student and work full time, you might notice that stress is part of my daily life. So it's like having a urinary tract infection every day, that I basically just have to live with according to my doctors. I know it may seem like I'm bitter towards doctors, but I just want a doctor that will actually take the time to listen and properly diagnose me instead of assuming it's nothing. So I just haven't had the best doctors.

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 7518
   Posted 8/10/2014 4:04 PM (GMT -6)   
Welcome to the forum Alyssa. I'm sorry you've had such a hard time. I don't think there's much out there in the medical world to treat IC but I hope your Crohn's is well controlled.
*******************
52 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day) generic Colazal (9 6 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), psyllium (2 tsp daily), mesalamine enema as needed. Gluten free as of 5/30/11. Scope in 8/11 found no evidence of inflammation!
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