Bowel to bladder fistula?

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clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 766
   Posted 1/2/2018 7:59 PM (GMT -7)   
UB,

I am thinking of you and hoping all things go well.

If we have a meeting we will have to wait and figure out a way to get you down here to....

Hang in there....

(((Hugs)))
Clo

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 365
   Posted 1/2/2018 9:29 PM (GMT -7)   
clo2014 said...
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


Me too! Me too! I definitely intend to meet up with you Clo! It would also be fun to meet up as a group of Crohnie girlfriends! I'm in Baton Rouge, so just 4 hours or so from Houston!
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Total Colectomy Oct. 2017!
Previously used: Remicade, Humira, Stelara, Imuran, 6MP, Apriso, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam, Prednisone
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 365
   Posted 1/2/2018 9:32 PM (GMT -7)   
UBT--
So glad the Stelara has given you some quality of life, but of course I hate to see you struggling with the fiztulas. I was supposed to see IBD Specialist before Christmas but changed my appointment to mid-January. Screw it, I will message her on the patient portal and ask who she'd recommend for you. XO
UBT--
I messaged my IBD Specialist and she said "Your friend sounds complicated. Her best options are Mayo Clinic or Cleveland Clinic". Did you speak to Cleveland Clinic yet?
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Total Colectomy Oct. 2017!
Previously used: Remicade, Humira, Stelara, Imuran, 6MP, Apriso, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam, Prednisone
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Post Edited (Plucky) : 1/3/2018 7:29:59 PM (GMT-7)


gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 439
   Posted 1/3/2018 6:20 PM (GMT -7)   
:O
I'm gonna be in Houston February 7-10 for training!
Let's make it happen, people!
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 : 3360
   Posted 1/3/2018 9:12 PM (GMT -7)   
Oh dang it, I am going to be out of town Feb 8-11 for my mother-in-law's wedding!!!! :'(
"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

gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 439
   Posted 1/3/2018 9:39 PM (GMT -7)   
POOOOOOOOOOOOOOOOOOOPPPPPPPPPPPPPP
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

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 766
   Posted 1/3/2018 10:13 PM (GMT -7)   
We will keep planning. It gives us something to look forward to!

UB....how goes it?

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3360
   Posted 1/4/2018 6:55 AM (GMT -7)   
@gypsy, what would your schedule be like on the 7th?
"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

CCB
New Member


Date Joined Mar 2017
Total Posts : 3
   Posted 1/4/2018 4:31 PM (GMT -7)   
I know how you feel. My first resection 1971 fistula to bladder , my surgeon carefull removed the rom the bladder. Never a problem with the bladder since

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 926
   Posted 1/8/2018 3:49 PM (GMT -7)   
Hi Everyone,

Good to hear from you, especially you Plucky. Thank you for reaching out. Yes, I am complicated, but I don't think that if I had the correct fistula surgery I wouldn't be in this mess.

Still haven't got the results from my MRI yet so can't 100% confirm bladder fistula but I'm sure I have a peri anal one.....again.

I can't afford Mayo or Cleveland. Best hope is that I write to the Dr gyps recommened and hope there is some compassionate financial support.

I'm having trouble since my Stelara infusion last Wed. Immediately following I began to have the "purging" bm's. Still it was only twice a day but volume was ...... shocking. Then by Sat I was up to 3 times and today 4. All still normal, although urgency is worsening. Also worsening are my bladder issues. The last 2 days I'm having more bladder accidentssad

Uro -gyne refuses to see me again, not even to do the cystoscopy she promised.

In addition, today I'm flat on my back and can barely move with such weakness, I can't even breath. I seem to recall this happening after my last Stelara infusion too. I remember having the incredible purges after Humira but back then I was still going 6 times a day with greater urgency.

I'm wondering if my almost "remission" (see?? this is why I didn't want to use the "R' word!!) was due to a combo of IVIG and stelara last month which is when I really noticed a strong turnaround.

Any ideas as to why I've gone backwards?

Clo---how are you? Any more thoughts on that RVF repair?

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 766
   Posted 1/8/2018 9:33 PM (GMT -7)   
UB,

Gosh...I am so sorry you are going thru this. I don't know anything about Stelera....so I have absolutely nothing.....just my healing thoughts and prayers.

I hope that you can find some hospital to help you. I know how challenging it can be to need help and to not be able to find it...and everything is so very expensive.

I have not heard from my GI and CRS. They are supposed to meet with everyone beginning January 22nd...(I think) I have spoken to some ladies that have had a colostomy with a RVF. They stated when the RVF was repaired or healed they had even more issues with urgency and accidents happening again....so now I am really confused and concerned. I am thinking I might leave well enough alone for right now.

Fistulas are nasty...sneaky...things that can cause such pain. I hate mine. When you have a colostomy your bottom still produces mucus. about 2 to 5 times a day I pass mucus....but with the fistula it just comes right out....so for me...that means shower time....but at least I do not have that sudden horrible urgency feeling every single time. I am unsure which would bother me the most...dealing with the urgency and accidents or having a fistula that diverts the output yet spares me some of the feelings of urgency. . Hmmm have to think on that.... Isn't it ironic that we have to choose the lesser of the two evils? There never seems to be a time when there isn't some type of possible consequence hanging over your head.

And now that I have cheered everyone up....lol...I better go. Time for more meds and yet another shower....

Clo
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