I am new to the forum Bladder fistulars

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goldylocks 47
New Member


Date Joined Mar 2009
Total Posts : 9
   Posted 3/8/2009 2:45 PM (GMT -7)   
Hi, has anyone ever had a bladder fistular and had it to bleed
when you used the potty.( Urinate)  I have had crohn's and have
had surgery in 2005 with illestomy bag. Then had it reversed 6 months later.  I also had to have my kidney removed in 2007 had
a tumor the size of a golf ball.  They had to remove the whole kidney.
It was cancer but they said it was 91% cured.  I still have to go for
check ups and test every 6 months.  I started with uc and then was told that it had become crohn's now am on pentasa and flagyl.
I am glade to be able to find this forum and be able to talk with people with the same disease. yeah
 
Hi again
I had to delete your other thread as it was identical to this one
Thanks for your understanding
LYN

Post Edited By Moderator (Howlyncat) : 3/8/2009 4:56:50 PM (GMT-6)


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/8/2009 3:53 PM (GMT -7)   
Welcome to HW
I have not had this problem but I am sure you will get some input from others'
Weekends are a tad slower it seems so have some patience and I do hope you stay with us

LYN


 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

Donate at  www.healingwell.com
 
                               Moderator@Alzheimer's..
              CO Moderator @ Anxiety and Panic........Co Moderator   @ Crohns                    
                            Keep The Fight Going..Or YOu Will Lose
               Look For The GOOD, Even At Your Lowest
  We Have Anxiety and Panic...................Anxiety and Panic DO NOT Have us         
   
                                     LYN


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 3/8/2009 4:06 PM (GMT -7)   
Hi Welcome Lyn to Healing Well glad you joined us .I know there is someone here that had the fistula to bladder but cain't remember who.. hope they see your thread.. It is a great relief to meet others here that can share our lives..hope you are feeling better after your surgery.. how long have you had the bladder fistula? I have had two one from large to small bowel and one to abdomen..So what are they doing to help you with the fistula? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


goldylocks 47
New Member


Date Joined Mar 2009
Total Posts : 9
   Posted 3/8/2009 6:08 PM (GMT -7)   
Hi Lyn, I am glade to hear from you.  well I am on flagyl and Pentasa.  I talked to my kidney doctor also about it in Dec. when I went for my check up he is really nice and talks to me a lot about all the things I am going thru.  He said that surgery didn't really help much and that most of the time they would tunnel thru some where else if they did do surgery.
I just had a flare with my crohn's and every time I do it effects my
bladder.  I don't think they (doctors) really know what to say, or what to do.  I think with crohn's it is just trial and error.LOL tongue    We are the ones that has to try and find what is best for us because each person is different and (doctors) try to lump us into one group...Know what I mean? I have had UC and crohn's since 1985... was in intensive care in 1993 with 4 pints of blood standing by.... I went in remission for awhile and then I guess you know the rest.....  When I had my kidney removed the doctor was so afraid of a flare with crohn's he said he wanted to stay as far away from my gut as he could...so he ended up having to take my 11th rib out...  I am also a diabetic...so as you can see my body is to quote my doctor one explosive mess LOL yeah    I hope to talk to you and others and that we can be of some comfort to each other.....Seems some of my family don't really know what I have to go thru...They just don't understand....My husband tries to as much as he can....But my mom said if I would just not talk about it and forget about it.....it would mabe go awayLOL tongue   Later!!!

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 3/9/2009 10:20 AM (GMT -7)   
I did have a fistula that led to somewhere along my urinary tract. The doctors could not locate exactly where it connected, even after lots of x-rays with contrast, and scopes of the worst variety....I knew it was tehre though, since I had gas passing through places it normally didn't. a very alarming symptom...

It was horrific, but since I had already been dealing with peri-anal fistulas for many years, I think I had an easier time coping than some people would. I knew it was time to seriously consider surgery when I had a sudden urge to go #2 (as I often did back then). Instead of a traditional "accident" I had an accident of the most horrifying type imaginable. Rather than crapping my pants in the normal sense, I had a surge of pressure, and had fecal matter come out my "manliness". I consider that my "bottom" (the word alcoholics use to refer to as lowest point in the progression of the disease).

I have now had my entire colon removed, and will have my ileoostomy forever....It was one of the most important, but still, one of the best decisions, i have ever made in my life.

Sorry to go right to the end of the story. I do know that many people have had less drastic surgery and/or medication and were able to recover from these types of fistulas. I think they are called intravesicular fistula. Anyway, while fistulas that leasd to the skin can stay active for mayn years, and are more of a pain, than they are dangerous...a fistula that leads to other organs is far more serious, and you need to stay vigilant in your treatment until it is resolved. Don't ignore the problem even if you start to feel better.

good luck....
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


goldylocks 47
New Member


Date Joined Mar 2009
Total Posts : 9
   Posted 3/9/2009 4:14 PM (GMT -7)   
Thanks, Glad bag,for the info. Seems we crohn's people get one issue settled and then something else comes along.LOL yeah

Jenn
Regular Member


Date Joined Oct 2004
Total Posts : 29
   Posted 3/15/2009 12:13 PM (GMT -7)   
Sorry to be so late to this post. I was DX with Crohns in 96, and my disease decided to fistula into my bladder in 97. I had the mother of all UTI's for about 6 weeks, before the doctors finally figured out what was wrong and did the surgery. First they sent me to a urologist to get a good look see, and he said, it's either a fistula or cancer. Well, no one wants to hear either of those words! Since I had the pain in the lower right abdominal area , they were fairly certain it wasn't cancer, but had to run the biopsy first to make sure. Sigh, more time with the UTI. I took antibiotics to attempt to curb the UTI, but when you have feces flowing into your bladder, no amount of antibiotics is going to help. I did find a wonder drug that would numb my bladder so I could go to the bathroom, can't remember what it was called, starts with a P and looks like a purple Skittle. Those were the best pills in the world! Although they turn your pee a lurid shade of yellow! Finally, after I peed a sunflower seed (yes, I know, I shouldn't have had it, but I wanted it soooo bad, by then I was surviving on Gerber Hawaiian Delight and Lipton Cup of Soup Creamy Chicken, and that's all I could stomach, I caved and had a handful of sunflower seeds one day), literally peed out a complete, unchewed sunflower seed; how I didn't feel it coming out I have no idea, probably the magic numbing pills? I knew I was headed for surgery soon.

I was scheduled for surgery on a Monday, but by the Thursday prior, I was starting to get really bad, fever, chills, probably going septic for all I know. I remember laying on the table in the surgeons office hyperventilating cause the pain was so bad. Of course, had to go clear diet Friday and Saturday, take a strong course of antibiotics over the weekend in prep for the surgery. By Sunday, was feeling really bad, took my prep of Golightly (gag!) and tried to get some sleep. Body decided it wasn't putting up with this crap for much longer, as I spent the wee hours of the morning puking, with the whole fever and chills thing. How my other half slept through me repeatedly leaving the water bed to barf was beyond me. And since I had nothing in my stomach, it was mostly bile and dry heaves. She did wake up at 3am and wanted to call the surgeon, and I was like, no let him get his sleep so he can operate on me at 9am. By the time my mother came to get me at 7am to go to the hospital, I looked and felt like death on a cracker. I was so dehydrated and mentally gone. They had a heck of a time finding a vein for my IV. Don't remember a whole lot after that, and the 11 days I spent in the hospital were not so much fun. I don't think I got enough morphine, I was constantly in pain. And mentally, I was wigging. We still joke about the message I left on voicemail for my other half, it started out all, "I love you, I miss you, I'm feeling better, sob, I want to come home, I hate this, god, why am I doing this to you?" I called her at her work and told her NOT to listen to the message when she got home, and she left work to come see me immediately. And then cried when she got home and listened to the message anyway (told her not too!).

They took out 10 inches of the end of my small intestine (bye bye appendix!), 4 inches of my large intestine and stitched up the hole into my bladder. It took me about 6 months to feel somewhat normal again. And I swear, they probably took a bit of my bladder in the process, because it seemed like I couldn't hold it as long or as much as I had prior to the surgery. But, all in all, it was definitely necessary and a relief when it was done. Since then, I haven't really had a lot of problems with my Crohns until just within the last couple of months. Now I have a peri anal fistula, which they put a seton in in January, so I got that going for me. Other wise, it's day to day with the D and the running to the bathroom and what not. Got me a new, better I think, GI doc, and he confirms that I have Fistulizing Crohns, so as long as I'm not having to bad of a time, he's holding off on putting me on Remicade or anything like that. So yay, no Pred for me! Just taking Asacol, B12 shots and vitamins to see how things go for now. Although he does predict that I will probably have something happen in the next 10 years that will cause me to have major surgery again. Crossing fingers against that, but I'm a realist enough to know he's probably right. Sigh. Just take it day to day and hope for the best is all anyone of us can do I think.

goldylocks 47
New Member


Date Joined Mar 2009
Total Posts : 9
   Posted 3/15/2009 9:17 PM (GMT -7)   
Hi Jenn, thanks for all the info about what you have had to go thru.
I had 2 major surgeries in 4-2005. I had a blockage had to have
12 inches of my small intestines removed and 1/3 of my colon.
Had to have an illestomy bag for 5 months.  They then reconnected me and took off the bag.  I now have a hernia, where the bag was.
They aren't going to do anything about that unless they have to.
I am on flagyl and pentasa. I am also a diabetic. I had to have my kidney removed in 10-2007. Had a tumor that was cancer. Before they found the tumor in my kidney i kept UTI's a lot. My urologists told me that most of the time that fistulars find other places or ways to tunnel thru some place else.  Hope you don't have to have another surgery,but the doctor is right, you may have to have more surgery in later years.  But like you said we just have to take one day at a time.
I have had this since 1985. Would go in and out of remission for years until 2005 when I had the blockage and they gave me that white stuff, to drink and it set up in me like concrete and almost killed me. I had toxic mega colon.  The doctor told my son that if my colon had brust that it would have been like mercury and hard to have cleaned out of my stomach and intestines, I almost left this world then.  Had to be transported to a bigger area medical center by medi vac.When I left the hospital in my home town i left with my stomach being pumped,and my stomach was growing by the minute,was looking as if I was ready to give birth to twins. Was in ICU from Friday night to Monday when they decided to do  emergency surgery.  I was in so much Pain when I woke up that I was crying and begging for help with the Pain.  They put a Morphine Pump on me and All kinds of other medications to bate down the pain level as much as they could.  It is no fun to have this disease. Know one really knows how we suffer,unless they are one of us. Know one thinks we are as sick as we are.  My husband understands I guess more than my other family since he is the one that lives with me. Having the bag was the worst experience i have had thus far. Would not wish one of those on my worst enemy. I didn't want to get out of the house I had such problems with it. It is good to have other people to talk to about Crohn's and all that it can cause. Glade I found the Forum. Later, thanks.for listening. smurf

onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 3/31/2009 7:53 PM (GMT -7)   
I have been to a kidney doctor i had an anal fistula already i dont know what this is i posted something earlier but i have no control over my bladder or my bowel for that matter have any of you experienced any of this they tried me on pills that worked put they would cause more kidney damage so he took me of them i go for a kidney dye test next wek again had a kidnet CT showed alot of scarring in the tubes and right kidney i have to give you a glance of my surroundings i live in a small town in nova scotia called stellarton the hospital can fit in my husbands trunk of the car so i have to travel to the city 2 and a half hours away from me to see my kidney doctor and my RA and my GI doctors,my sister was only born with 1 kidney and we both took pills for our kidneys for alot of years for wetting ourselfs and we grew out of it , now its just embrassing pooping and peeing myself could things get any worse.Any advise would be great help the doctors are not doing a thing for me i have bad pain in my lower back and when i have to pee its there there is no warning i stand i pee i hear water i pee i am scared please help if you can or direct me to someone who could. I had crohns since i was 13 i am 35 now i also have fibro and RA PA TMJ OA and the list goes on i am tired and scared and i am suppose to be leaving for cuba with my husband the end of april is this dont change what will i do cry thanks for listening to me ramble and sorry that you are having a hard time but i can learn from you so thank you. Your bowel buddy Jenn yeah
i love this site a friend found it for me.Another one would ccf crohnes and colitis foudataion


goldylocks 47
New Member


Date Joined Mar 2009
Total Posts : 9
   Posted 4/1/2009 6:03 AM (GMT -7)   
Jenn, I am so sorry you are having all of these problems.  You are so young to be going thru all of this.  You are not much older than my son he is 32 years old.  I worry that he may end up with crohn's.My grandfather had a blockage and he wouldn't let the doctors do surgery and it got so bad they had to remove all of his intestines except 11 inches.  They called it a straight gut.  He would eat and it would go straight thru him.  I was pregnant with my son when he had this done..He lived about 19 months before he died.  So you can guess how I felt when I found out about my condition.  shakehead I have good and bad days. Most of family members don't understand what we go thru.  I depend on God, I talk to him a lot.I hurt most of the time in my back and the left side.  I have to go back to my kidney doctor in June and before the end of the year I have to have a C T scan.  I too live in a small town, and have to travel about 2 hours to an area medical center. I know what it is like.  Do you have any children? How is your husband handling the situation?  My husband is very understand....we have been married for 44 years in June. I hope things turn out alright with your test.  Will be praying for you....God Bless you!

onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/9/2009 7:30 AM (GMT -7)   
goldylocks 47 said...
Hi Jenn, thanks for all the info about what you have had to go thru.
I had 2 major surgeries in 4-2005. I had a blockage had to have
12 inches of my small intestines removed and 1/3 of my colon.
Had to have an illestomy bag for 5 months.  They then reconnected me and took off the bag.  I now have a hernia, where the bag was.
They aren't going to do anything about that unless they have to.
I am on flagyl and pentasa. I am also a diabetic. I had to have my kidney removed in 10-2007. Had a tumor that was cancer. Before they found the tumor in my kidney i kept UTI's a lot. My urologists told me that most of the time that fistulars find other places or ways to tunnel thru some place else.  Hope you don't have to have another surgery,but the doctor is right, you may have to have more surgery in later years.  But like you said we just have to take one day at a time.
I have had this since 1985. Would go in and out of remission for years until 2005 when I had the blockage and they gave me that white stuff, to drink and it set up in me like concrete and almost killed me. I had toxic mega colon.  The doctor told my son that if my colon had brust that it would have been like mercury and hard to have cleaned out of my stomach and intestines, I almost left this world then.  Had to be transported to a bigger area medical center by medi vac.When I left the hospital in my home town i left with my stomach being pumped,and my stomach was growing by the minute,was looking as if I was ready to give birth to twins. Was in ICU from Friday night to Monday when they decided to do  emergency surgery.  I was in so much Pain when I woke up that I was crying and begging for help with the Pain.  They put a Morphine Pump on me and All kinds of other medications to bate down the pain level as much as they could.  It is no fun to have this disease. Know one really knows how we suffer,unless they are one of us. Know one thinks we are as sick as we are.  My husband understands I guess more than my other family since he is the one that lives with me. Having the bag was the worst experience i have had thus far. Would not wish one of those on my worst enemy. I didn't want to get out of the house I had such problems with it. It is good to have other people to talk to about Crohn's and all that it can cause. Glade I found the Forum. Later, thanks.for listening. yeah Hi goldylocks sorry it took me so long to reply i just got out of the hospital yesterday and i am still not feeling well i had a bowel obstuction again it was bad because they cant do anything for me there is no surgeries that can be done i dont have enough bowel left so there is nothing they can do for me know i only have 11feet of bowel left now,so they tried fluids and IV steriods and antibiotics and they wanted to put down the NG tube i told them no to wait to see if my bowel will start to work on its own i never went in 8 days so i was in alot of pain and my belly i looked so pregante everyone asked me when i was having my baby,my belly was so swollen so i finally started going but the obstruction is still not moved out all together.As for my bladder i am still having trouble with it still peeinnngg myself and no answers but i got an appointment to see another kidney doctor,the surgen thinks that my bowel is so inflamed that its putting pressure on my bowel there fore pushing on my bladder and causeing me to lose control of my bladder,but i am going to Halifax to get the light put in my belly button and take a look at my bladder and make sure there is no fistula there god i hope not. cool

i love this site a friend found it for me.Another one would ccf crohnes and colitis foudataion


goldylocks 47
New Member


Date Joined Mar 2009
Total Posts : 9
   Posted 4/9/2009 8:33 PM (GMT -7)   
Sorry Jenn, that you have been in the hospital. Sounds like you
have been thru a lot also.  I hope and pray that you don't have a fistula.  I know how painful all of this can be.  I to had a blockage.
Had it for over a year, before they finally found it.  It was too late then because they had already given me that stuff to drink.  Then I had to be rushed to another hospital.  It sit up toxic megan colon.  I almost lost my life over it.  I was so swelled when I left the first hospital I too looked like I was giving birth to twins.  Do you have a lot of pain?  When I had the blockage I had pain and was hurting in my right side,the doctor said the blockage was in my left side. Do you have a lot of gas with the blockage?  I sure did. The things we go thru in the hands of some so called doctors.  I have a good doctor now.  I hope that you also have a good one.  I will pray for you,that God will take care of things and that you won't have to go thru no more surgries.
God Bless you Jenn, hope you will be feeling better real soon.
Your bowel buddy Goldeylocks yeah
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