Bowel to bladder fistula?

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U B Tough
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Date Joined Aug 2015
Total Posts : 967
   Posted 12/16/2017 10:46 PM (GMT -6)   
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.
female, Canada


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 150mg imuran

Doing much better and more stable on Stelara. No remission....yet but closer!

IVIG on occasion.

cookie38
Regular Member


Date Joined Oct 2006
Total Posts : 65
   Posted 12/19/2017 10:14 AM (GMT -6)   
Hi U B Tough

I wanted to reach out say hi, and that yes, unfortunately I have been through similar, mine went to both my bladder and vagina. That was 4 years ago, back to current day I am again in remission and doing well so there is always (touching wood) a silver lining.

I could ramble on for ages, my case really was worst case scenario so I don't wish to alarm you. I do though want to sympathise with how this is making you feel, I remember oh so vividly!

Sending hugs and if you would like to chat more, I am more than happy to do so.

Debbie

Post Edited (cookie38) : 12/19/2017 9:21:38 AM (GMT-7)


scifigal2k
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Date Joined May 2012
Total Posts : 3449
   Posted 12/19/2017 3:12 PM (GMT -6)   
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.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

Deak
Regular Member


Date Joined Mar 2011
Total Posts : 174
   Posted 12/19/2017 6:19 PM (GMT -6)   
I do have a bowel to bladder fistula and I have had burning pain. Aspartame is my biggest enemy, so stay away from diet drinks or sugar free gum.

I found that chemicals in food or drinks (even refined sugar) would hurt me too certain levels.

I have a second internal, which goes from sm bowel to lg bowel, that one I used to have to take tylenol 3's

Frutose/Glutose additive does hurt the bladder too

Stick to water
Male 41
Crohns Dx - Jan 2011.
Imuran- 150 mg
Remicade
MMJ

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 967
   Posted 12/20/2017 6:42 AM (GMT -6)   
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.
female, Canada


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 150mg imuran

Doing much better and more stable on Stelara. No remission....yet but closer!

IVIG on occasion.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3449
   Posted 12/20/2017 7:02 AM (GMT -6)   
The only real way to diagnose a bowel-to-bladder fistula is to do a bladder scope. It's a bit like a colonoscopy, only they also fill the bladder up with water. They'd be able to see anything leaking out as well. I'm surprised that the uro-gyn dismissed you so quickly.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 967
   Posted 12/22/2017 7:32 AM (GMT -6)   
I'm not. As I said this is the 6-7th gyne to refuse to treat me since Aug'16.
female, Canada


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 150mg imuran

Doing much better and more stable on Stelara. No remission....yet but closer!

IVIG on occasion.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3449
   Posted 12/22/2017 11:14 AM (GMT -6)   
Wow, that is absolutely ridiculous. Since my fistula, I've seen maybe 5-6 OB/GYNs since we've moved several times, and I've never had one refuse to treat me.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1882
   Posted 12/22/2017 12:50 PM (GMT -6)   
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.
DX with CD Aug. 1982
Gerd secondary to crohns
Entyvio
Methotrexate
Monthly b-12 injections
40 mg Protonix / twice daily
Zoloft
xanax
folic acid

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 967
   Posted 12/23/2017 8:46 AM (GMT -6)   
I have an RVF too. I know I have a perianal abscess that's pressing on my pudendal nerve causing me agony. I spent yesterday in tears.

Unsure of the bladder fistula. I guess MRI will tell.

My posts from Aug-Dec last year on the UC site document how this started and my trouble with gynes. It's the same thing, the torture "down there" is unbelievable. Chiro has helped but they are closed for the holidays.

All the gynes refuse to help saying its a GI issue. GI's don't have the training or skills to even examine a woman, so they say it's the gynes job. Everywhere I go I've been discriminated against because I have CD. All I need is a nerve block or botox to help yet no one will do it.

My bowel is not stopping me from living. It's the vulvodynia caused by CD.

If I had the energy to formally document and write to the news papers/ gov't I would. Even TV shows on how badly I've been treated, I would. But I cannot. I'm getting panic attacks just prior to going to gyne's office. Yesterday was terrible. There;s nothing to relieve the pain. I've increased my gabapentin to 3000mg but it's not working. PTSD is terrible.

I don't know how I'll get through.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3449
   Posted 12/23/2017 3:54 PM (GMT -6)   
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.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 881
   Posted 12/28/2017 10:10 AM (GMT -6)   
UB,

I am checking in on you. I can not imagine what you are going thru. I can only think of the pain my RVF caused/causes me and I shudder to think of any other parts being in pain.

I too have had 2 gynecologist turn me away. One I had been seeing for years. They both said they did not do RVF and Crohns. They did not have the required knowledge base.

Here in the US....regarding some doctors...I think that I don't fit into their business module. Time is money and doctors need to do what they know otherwise there are liability issues....so I can understand. It just makes it more difficult for some patients. Doctors can get into medicine for the love of patients and to make a difference but they have to pay all their bills and they do not want to inadvertently cause more harm..

I agree with Sci-fi...perhaps you could try some specialists elsewhere that are still in your health plan? I just wonder how you would travel with the pressure on your lady bits. Perhaps you could find someone to take you and a doctor that would give you some pain meds that would help you during that timeframe..

I am sorry you are going thru this.....

Clo

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 967
   Posted 12/29/2017 4:38 PM (GMT -6)   
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.
female, Canada


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. RVF. Failed setons...it was pure torture.
started Stelara May 24, 2017. 150mg imuran

Doing extremely well on Stelara!

IVIG on occasion.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3449
   Posted 12/29/2017 7:36 PM (GMT -6)   
Yep, in a suburb outside of Houston called Cypress (Fairfield, to be specific). Who's the CRS that you're going to see? I know of two fantastic ones.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 967
   Posted 12/31/2017 10:27 AM (GMT -6)   
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 sad

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.
female, Canada


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. RVF. Failed setons...it was pure torture.
started Stelara May 24, 2017. 150mg imuran

Doing extremely well on Stelara!

IVIG on occasion.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3449
   Posted 12/31/2017 11:01 AM (GMT -6)   
You have the fistulae because you're not in remission. Period. Bowel may look okay, but that doesn't mean much since Crohn's isn't restricted to just the bowel or bowel habits. I can't remember if you've tried other bios besides Stelara? I really don't think that a UTI could cause air.

I just want to clarify: are you actually passing air, like a fart? Or are you just seeing bubbles in your urine?
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 967
   Posted 12/31/2017 2:58 PM (GMT -6)   
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.
female, Canada


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. RVF. Failed setons...it was pure torture.
started Stelara May 24, 2017. 150mg imuran

Doing extremely well on Stelara!

IVIG on occasion.

Newmommy26
Regular Member


Date Joined Nov 2017
Total Posts : 42
   Posted 12/31/2017 3:50 PM (GMT -6)   
UBT sorry you’re going through this. sad It’s a long shot but how about emailing a high profile Dr in the US and asking for help? Your very challanging case might play on their natural need to help a patient, especially one who’s suffering as much as you are and with doctors refusing to help.

gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 451
   Posted 12/31/2017 6:04 PM (GMT -6)   
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!
Be kind, for everyone you meet is fighting a great battle. -Philo of Alexandria

Live as if you liked yourself, and it may happen. -Marge Piercey

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3449
   Posted 12/31/2017 9:31 PM (GMT -6)   
I have two different CR surgeons that I really have liked here in Houston as well. One downtown and one out here in the suburbs. I haven't had surgeries with either since I met them after I had my fistula and stuff, but they both seemed extremely knowledgeable and competent. And by that, I mean they took everything I said about my history seriously and never once offered to try to fix it or anything lol. When a surgeon claims they can easily fix my fistula, I immediately look for a different one. And when an OB tells me I should just give vaginal birth a try, I will fire them, even if I'm three weeks away from my due date!

Let me know your email address and I can email you all the contact info for the doctors. And as an aside, if you need a place to stay we have a guest bedroom with an attached bathroom. smile I can't promise quiet, since I have young kids, but I wouldn't expect you to hang out or anything if all you want to do is sleep and stay near a bathroom! smile
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 881
   Posted 12/31/2017 10:59 PM (GMT -6)   
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

gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 451
   Posted 1/1/2018 9:59 PM (GMT -6)   
Either way, come to Texas!
We're all here and we all have fistulas! Clo in Dallas, Scifi in Houston, and me in Austin.
We could have a fistula partayyyyyyyyyyyy.
:D
Be kind, for everyone you meet is fighting a great battle. -Philo of Alexandria

Live as if you liked yourself, and it may happen. -Marge Piercey

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3449
   Posted 1/2/2018 10:00 AM (GMT -6)   
Heck yes! We should all get together!! We're only a few hours away from each other!
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 881
   Posted 1/2/2018 1:48 PM (GMT -6)   
Yes!!! It is good to know that part of my support group is so close. We do need to make plans to meet in the middle.

Clo

Newmommy26
Regular Member


Date Joined Nov 2017
Total Posts : 42
   Posted 1/2/2018 3:56 PM (GMT -6)   
Good luck tomorrow.
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