Bowel to bladder fistula?

Any one with the misfortune? I'm freaking out a bit with my symptoms......

MRI at end of Dec which couldn't come soon enough. I'm in unbelievable pain. (seems to be the way with me). My lady bits haven't stopped burning for over a month now. UTI's and yeast. Passing air through urethra.

If you have a bowel-to-bladder fistula, then you may not actually have UTIs but the tests are detecting bits of stool. If you have air coming out of your bladder, then that's almost 100% a fistula. You need to call your doctor ASAP.

Thanks everyone. Sorry you are also dealing with this. Fistulas are a lonely battle especially in Canada where they don't repair them.

I saw a uro-gyne yesterday who said I didn't have a bladder fistula. She did an internal. I thought you needed some sort of imaging to determine that?

She removed a small polyp and took more swabs. She couldn't retest my urine because I'm currently on septra for a UTI. The septra isn't working at all.

IF this is vulvodynia pain from my recto-vag fistula then she can't help me but will refer me to someone else. AGAIN. This would be my 6th?? gyne who refuses to see/treat me because I have crohns.

I took Tylenol 3 but it doesn't touch the pain. I'm wearing the same pair of baggy pants for the last 5 weeks or so as I can't have anything touch me.

I go back to see my family doc tomorrow. I'll do an ultra sound this week as well.

I'm not. As I said this is the 6-7th gyne to refuse to treat me since Aug'16.

I'm not in the same boat as I have an RV fistula. But when I went in for my annual gyne appointment yesterday and discussed it with the dr. all she managed to say was "bless your heart, I know you have a terrible time dealing with that". So I know what it's like to feel like you aren't being taken seriously.

This may not be an option, but could you relocate? Maybe even come to the States for treatment to doctor-shop? Heck, I'd even refer you to my OB/GYN who is fantastic.

At this point i'd be beyond shocked if I didn't have a bowel to bladder fistula. I've been passing air there all day. It's very disconcerting.

I had a pelvic/transvaginal/abdomincal US yesterday. My symptoms are:

Severe pain/swelling of pelvis
Worse when bladder is full
Itching
A bit stress leakage when I sneeze
Multiple UTI's that haven't been touched by abx
Air


I have no stool. No odour. My internal organs just hurt.

Would the U/S be able to detect a fistula? Either bladder or RVF?

I'm continuing on with life as I have no choice. I was lucky that xmas day was relatively good so that I was able to distract myself playing with my nephews. I'd say that my bowel is in remission as I'm basically getting up and going! Life can be cruel at times to now have to deal with this. I have tylenol 3 but it doesn't touch the pain. It seems like the pain is swelling related. Ive been using MJ at night which is the most effective.

I'm having anxiety about my MRI tomorrow and the results which I get next Thurs. I know something is wrong and I'm not prepared to hear "you have another fistula." Worse is that I have a bladder fistula and they won't repair it.

i don't know where else to go in Canada.
Gyps recommended her CRS in H'ouston and I'd like to send him and email once I get the MRI results. Sci-fi-- is your gyne in the Houston area? I'd like everything to be done at the same location.

I do hope my current CRS will do a LIFT/FLAP and fix these fistulas, especially if I'm in remission. I'm shocked at how conservative things are here.

I'm wondering if I should just go ahead and try Monurol, which is a new abx for UTI's? I have the script but haven't filled it yet. Apparently I'm supposed to wait for the results of my urine test but my doc is closed for the holidays.

Hi scifi--gyp recommended Dr. Thiru Lakshman in Houston. I have to email him and then figure out all the logistics....especially how I'm ever going to afford any treatment in the Us.

I'm very upset and tearful. Had a breakdown this morning. Was up all night with air passing through and now I'm having urine leakage

I don't know why I'm not listened too. I've told several docs that the peri anal fisutlas need to be repaired because it's affecting my lady bits. They don't care; just say they refuse to fix them because it won't work due to crohns. Now look at me??? I'm in swollen agony and now have a bladder fistula.

How is it possible that I would have all 3 fisulas??? They have to repair the bladder one, right?


These UTI's have been going on since November....is it possible that a UTI is causing air/urine and I don't have a fistula? I get the results of MRI on Thurs.

I don't know what to do in the mean time. I feel gross and can't take anymore of these fistulas. Especially when bowel is fantastic.

I managed a long walk in the snow yesterday with my dog without any bowel worry. Now it seems I'm worried about peeing myself....Yay. More pads. I've been able to distract myself and keep going but today I just want to curl up in a ball and cry.

I'm sure there's another abscess. Yes, perianal disease is the hardest to treat. But good strides with Stelara seeing as I've been flaring for 5 years. Humira didn't touch the disease. The only study I found with Stelara and fistulas showed significant improvement at the 6 month mark which seems correct for me. I'm only going twice a day and getting on with life, eating everything etc etc. I'm so grateful for this.

I firmly believe that if my surgeons actually tried repairing my fistula rather than just draining (7 I & D's) that I wouldn't be in this position. I feel like I've been dismissed and neglected from the beginning of this ordeal.

At times there are epethelial (sorry spelling) in my urine and I'm passing air through the ureathra. Weirdest feeling. Today I leaked urine. I took the new abx Monurol today. Forget waiting for results of urine test. I don't want to risk this spreading to kidneys. Monurol is risky for c-diff so I had to also purchase Florostor.

I'm trying not to get ahead of myself pending the actually diagnostic results but I can't really see how I don't have a bladder fistula.

Thank you scifi for your support. Any OB help is appreciated. I truly need help from competent surgeon willing to come up with creative solutions to my very complex history.

Hey UB!
My CRS is in Austin, Texas, but that's really not far from Houston.
You could fly in to Houston, see scifi's doc, and then take a car or bus up to Austin and see mine. FYI, he only does morning appointments, one in North Austin and one in central Austin. But he's worth it!

UB,

If you want my CRS contact info please email me. I am also in Texas...Dallas.

IMO....I would get copies of my medical.info, write a cover letter and start sending it to teaching hospitals/GI/CRS departments asking them to take your case pro bono. I would also be a giant advocate for myself and have the Canada doctors trying to help you with this. (Meaning I would bother them until they helped me find other asdistance out of desperation)

My CRS....he is open minded but he does not make promises. He has to see all the information before he talks to you and he is smart enough to ask for other input. He wants to make sure he should attempt something....last time I saw him he said "just because you can do something doesn't mean that you should" lets get some others inputs, examples and issues that they faced...lets cover our bases. He is very hesitant to Fix my spenctor, rectum and RVF. For people with severe fistulizing crohns there are times when the repair just be put off or not done. Saying that.....he still thinks that with the way my RVF is expanding....we may have to just do it.

I don't know what the right answer is. I wish I were more help. Please know that you are in my thoughts and prayers.

Clo

Heck yes! We should all get together!! We're only a few hours away from each other!

Good luck tomorrow.