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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Fistula? Or no Fistula? That is the question..



08-12-2012, 11:13 PM   #1
guitarjamie03
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Fistula? Or no Fistula? That is the question..

Ok.. so I am not sure if I have a fistula going from my colon to my bladder. My Crohnís doc says I do, my surgeon says I donít. I have had a colonoscopy, and a CT scan and either can confirm or deny the presence of a fistula going to my bladder. Now, let me throw something more into the mix, I have had an abscess in my pelvic cavity, many bladder infections and UTIs earlier this year (those are now gone). I also am experiencing some pressure on my bladder when I go, but not pain. The surgeon asked me if I am passing air, I said no. He asked if I had blood or stool in my urine, I said no. Lastly, he asked me if I was passing bubbles in my urine, I said no. He told me that all of these symptoms indicate a fistula and because I answered no to all of them he does not think there is a fistula. Now I am really confused! Does anyone out there have a bladder fistula and experienced something similar or different?

Thanks!
08-13-2012, 01:04 PM   #2
Jimena
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I have a litlle bit similar situation, my (possible) fistula isn't in bladder though but.. Surgeon say that i dont have and GI say i do. MRI doesnt show that for sure. I have lower back pain and hips ache on the other side.

I dont have answer to you,i just want to say that hang in there
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Severe Crohn's since 2002. Tried every longterm medicine there is, Pentasa, Azamun, Remicade, Humira...
Temporary colostomy 2013 -> Parastomal hernia
Surgery, mesh, end colostomy 2014 -> deep wounds that didn't heal, three fistulas around stoma
Colon removal and ileostomy 2015 -> So far so good

And after every stoma surgery, nasty Pyoderma Gangrenosum around my stoma.
08-13-2012, 01:22 PM   #3
Grumbletum
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Hey there. Has the Crohn's doc said why he/she thinks you do have a fistula? I had one bowel to bladder which they managed to heal: combination of the meds in my signature and a couple of courses of antibiotics.
But in the last couple of months I've been having some pelvic pain and - like you say - pressure when I pee. I took a sample to the surgery about a month ago and I had a few White cells and blood, so the nurse gave me a mild antibiotic which helped, but it's back again. I guess I should really get it checked out. I'm wondering if it's maybe from scar tissue where I had the fistula and an abscess on my bladder.
J, when I had those, I too had very bad lower back and hip pain.
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08-14-2012, 11:20 PM   #4
guitarjamie03
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He thinks I have a fistula because he said that is it common for people that have an abscess to have a fistula too and my abscess was really close to my bladder. I go for blood work again next Tuesday, so if it is inflmation maybe they will be able to tell a difference.


Sorry to hear that you are expierencing more pain again. I hope the meds help.
08-15-2012, 02:00 AM   #5
Thermo
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What medication are you on?
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Diagnosed-1992 (Age 8) Regional Enteritis 555.0

Meds - Humira, B-12 Injections, Vitamin D, Iron, VSL#3

Surgery - Open Ileocolic Resection July 24, 2012 (44cm removed 17 inches including appendix)

My Advice: Find a good GI, Primary Doctor, Optician, and spouse and stick with them, don't be afraid of the Biologics and 6 MP's if you hit the disease hard at diagnosis you fight off the natural progression and have a better quality of life.

http://www.youtube.com/watch?v=PC2VyIxiWmk
08-16-2012, 12:40 AM   #6
guitarjamie03
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I am on:
Humira (will be injecting the second half of the loading dose on Monday).
Imuran
Flagl
Macrobid
Vitamin D, C, and B-12
Cranberry

Forgot to add that I will be going to the clinic on Monday or Tuesday for more blood work (the clinic messed up my appointment so I have to call them in the morning.)
08-16-2012, 01:03 AM   #7
Thermo
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Ah so you just started the Humira? This is a good idea if you have fistulas. Have you ever had a fluoroscopy? If done well they can usually pinpoint a fistula much better than a simple CT scan. The surgeon has a point with everything he asked however I have a feeling he is thinking of a major fistula, there could be a much smaller one that is big enough to cause symptoms for you but not present itself with those warning signs. You could of had one previously that healed and you are feeling the stricture/scar tissue as that will still be there until it's cut out, it all depends fistulas are tricky little guys.
08-16-2012, 01:19 AM   #8
guitarjamie03
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Yep! I started Humira on the 6th of August and I can already tell a difference. It is not a big difference, but I don't feel as much pressure on my baldder like I was before I strated it.

What is a fluoroscopy? I don't think I have had that test.

You could be right about the stricture. So intresting! This is still all so new to me.
08-17-2012, 01:21 PM   #9
guitarjamie03
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ok so here is something new... When I woke up this morning I went to the bathroom like always and when I finished, I noticed somehting large and white (not toilet paper). It looked like some type of tissue. Should I be concerend or tell my doc about it?

Thanks for letting me discuss my body functions!
08-17-2012, 01:45 PM   #10
Grumbletum
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Lol, body functions are our favourite subject! :-)
I'm going to be equally graphic. This thing, did you see it after peeing or after a bowel movement? Im asking cos mucous and/or debris in or after you pee could be signs of a bladder fistula. I'd keep an eye on things and tell your doc if it happens again.
08-17-2012, 02:59 PM   #11
guitarjamie03
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It was after I went pee.
08-18-2012, 12:30 PM   #12
renee177
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I am now going through this same process of trying to determine if I have a fistuala to my bladder. Just had a cystoscopy which was negative and need to schedule a contrast CT scan. What I find particularly perplexing are the intermittant symptons. I have had severe back pain, stool in urine and passing air through bladder but the symptons seem to come and go. right now I feel sympton free with respect to the bladder. GI problems are in flare after having been in remission for about 30 years.

Guitarjamie03 I know this doesn't respond to your posts directly but I wanted to share with you my similar struggle and discovery.
08-18-2012, 01:42 PM   #13
guitarjamie03
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Yeah that does help. I don't have any of the back pain though, that really has to be rough. I really hope that I can get into remission soon. I am really getting tired of being tired!

My aunt (who is also a nuse and who has had some GI issues, but not Crohn's), called me this morning freaking out about my post above about the matter in my urine and wants me to go to the ER right now, but I am feeling fine and I have a normal temperature. I will be keeping an eye on this though and I will be contacting my doc on Monday to let him know what happened. My aunt likes to over react sometimes.

Thanks for the encouragement!
08-18-2012, 10:24 PM   #14
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About a year ago, I had air in my urine. The symptoms of audible air when urinating and bubbles in the urine were not constant but happened often. My gastro dr. said I might have a fistula. She sent me to a Crohn's specialist. After a CAT scan with contrast, they saw thickening of the bladder dome and inflammation in the ileum but detected no air in the bladder and no fistula. I also had the cystoscopy and it was negative. The specialist decided to start Remicade when I asked why would I have to start remicade when I didn't have a fistula, she said just because we can not see it the fistula in the scan it does not mean you don't have one, it just means we can't see it. Remicade seems to have done the trick because my symptoms gradually lessened and now have completely disappeared. Crohn's is just a really weird disease.
08-18-2012, 11:10 PM   #15
guitarjamie03
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Thats intresting Mozart. Now that I am reading more about this I am beginning to think that I do have a fistula.

I did text my GI doc today and he wants me to go to the cinic tomorrow to get a urine sample done just to see if there is bacteria in my balddar and he thinks that it might be kidney stones... Does this sound right?
08-19-2012, 03:27 AM   #16
Grumbletum
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Yes, it's good that he's testing for kidney stones as they are fairly common in Crohn's patients. Guess he's just exploring every avenue which is what you want. I know there are other members whose intestinal fistulas were only discovered when they were having surgery. With mine they saw air in the bladder on a CT scan.
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