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wishiwasalilbittaller
Regular Member


Date Joined Dec 2005
Total Posts : 20
   Posted 9/1/2008 1:21 PM (GMT -7)   
I'm not a regular poster on here but often read through posts when I need reassurance that I'm not the only one!
However, it's time for me to post again...
I have recently had an MRI scan to reveal that I have a 4cm long fistula which comes off and joins back onto my bowel wall.  It doesn't got to 'the outside' like it seems some peoples does.  I had been having problems with mucus leakage for nearly 3 years before my conultant sent me for the scan and the constant feeling 'messy' and 'dirty' has really affected my confidence.  It also causes me a fair amount of discomfort if I sit down or stand up for too long.
It now seems that it will get sorted out as I am due to have an appointment with a surgeon who is going to operate on it.  The reason I'm posting is to find out a bit more about what the op involves and things I should be asking the surgeon?
BTW I have been diagnosed with Crohns disease for 8 years and my symptoms have in the most part been mild.  I haven't had a flare up for several years and am taking asacol.
Also while I'm here I would just like to say how much I admire those people who have things a whole lot worse than me, how everyone supports each other and can still laugh at their situation.
I hope someone will be able to answer my question.  thanks.
31 year old female from Birmingham UK.
Diagnosed with Crohns in Oct 2000
Currently taking Asacol, vit supplements, acidophilus
Not feeling too bad at the mo - apart from the pain in the bum!


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 9/1/2008 6:12 PM (GMT -7)   
I don't have experience with fistulas that are sneaky and stay on the inside like yours, but I've been through the surgeon routine enough to throw at least a couple things out there.... hopefully someone with a case closer to yours will follow along soon.

#1 How invasive is the surgery being performed, and what are the IMMEDIATE risks (i.e. puncturing something or the likes) I never feel bashful about asking the surgeon directly how many times he's performed the procedure and any complications that he's experienced. A surgeon is, in the end, a businessman, and you have the right to "shop around" if you don't feel comfortable. I can't stress enough how important it is that you feel COMFORTABLE with your surgeon if at ALL possible. A sore bum is enough to worry about, so you don't necessarily have to LIKE your surgeon, but you need to trust him/her.

#2 How successful is this surgery method for the problem at hand? I would get recurrence rates, for sure. SO many of the surgeries that are popular for crohnies seem to start a never-ending cycle of surgeries, so make sure this one is going to GET you somewhere.

#3 Get a defined "title" for the surgery (i.e. my experience is with peri-anal "Incision and Drainage" surgeries. Make sure you have a name for the surgery in case you feel like "googling" it or asking more surgery-specific questions. It sounds like a no-brainer, but there are so many different methods and names for this stuff... and surgeons like to look like they're in a hurry, but I don't care - take the time to get the answers, darn it... I've used the following line three times myself: "I realize that you are over-worked and spread really thin, but this is my body, and it's the only one I get. I have more questions."

#3 What medications are going to be administered in relation to the surgery and what are THEIR possible side effects (i.e. are they gonna shove you on steroids and if so, for how long... antibiotics, etc.) It's always good to know what they're "brewing up" for your belly and make sure that you're comfortable with their prescription plans.

#4 What alternatives to surgery do you have? The surgeon might think it's a "done deal", but you have a right to know if there's a chance that 4 months of a certain medication could accomplish the same end result, or if there is an alternative of ANY kind to this surgery. Getting sliced is usually a last resort, so make sure they're not jumping the gun.

I'm sure I'm forgetting stuff, but the last thing I can think of is to get all these questions answered, do some more homework, and then decide if you're ready to proceed. Don't let them boss you around and tell you that you have to schedule it for this week if you're not comfortable and prepared to do so. If you've got a good surgeon, and he answers all your questions and you feel confident that this is what needs to be done - then by all means go for it. But if you're hesitant, or still have unanswered questions, keep badgering someone until you have all the pieces you need.
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 9/1/2008 6:54 PM (GMT -7)   
I use 2 folded 4x4 gauze sponges to catch my drainage. I fold them in half and tuck them between my butt cheeks. They stay in place no problem, and when I use the restroom, I change them. It keeps the drainage away from me so it does not irritate me, and I don't have to worry about it going places it shouldn't. My fistula comes out right beside my anus and I have a seton in it. I get the gauze at a medical supply store, and it is only about $5 for a big pack of them that lasts me at least a month.....this is alot cheaper than buying gauze at a regular store.

kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 9/2/2008 6:53 AM (GMT -7)   
I had a resection where they found a sneaky fistula like yours and had to remove it a year ago. The plan was a laparscopic surgery, simple resection at the terminal ileum and get rid of the appendix too. They got two of the four incisions done and saw what a mess I really was and had to open me up completely, about 10 inches. The surgery was supposed to be 2 hours, turned into 4. It helped alot, and I would do it again if I had to, recovery was about 6-8 weeks. But I'm sitting here waiting for insurance approval for Humira because the disease is back, active disease in my colon now. If I did have to have surgery again, there are few things I would make sure of this time: I want to be put on diflucan for yeast infections right away because of the antibiotics; I want orders in my chart that when I feel ready or have too much discomfort, then the catheter can be removed early (I had to threaten to rip it out myself last time, it caused a lot of bladder irritation that took longer to heal then the incision); I want to know what pain meds they will be sending me home with and I want it written in my chart (I had to deal with an on-call guy who discharged me. when I said I wanted percoset because it worked so well, he said it worked too well, he doesn't believe in prescribing them! He sent me home with 10 pills to last for 12 days!) I will make sure the surgeon sees my point of view that I have had enough pain and that pain wears me down, I can't heal effectively so I need good meds; I would make sure that the doc understands that I don't want to be rushed back to work full time, I could have used a week or two at part time.
diagnosed w/Crohn's 11/06. 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bentyl, vicodin as needed, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Active disease back, darn it 8/08. 11 year old son with IBS-C, on Bentyl.


Ladybugs
Regular Member


Date Joined Jan 2006
Total Posts : 158
   Posted 9/3/2008 8:51 AM (GMT -7)   
I can't comment on the sneaky internal fistulas, because mine drains out to the skin. But I do want to say that I agree with Chroniemom - the best way to combat that "not so clean" feeling that you get due to leakage is to tuck some gauze between your cheeks. I use 3x3 squares and I fold them in half once. I change them when I go to the bathroom. It keeps things from getting so messy.

Best of luck to you

NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 9/3/2008 10:33 AM (GMT -7)   
I had fistula surgery a few years ago and I was told it was a success. Of course, I went for a second opinion just to be sure and that surgeon got pissed at me because he couldn't find any signs that I had a fistula at all...he thought I was some kind of weirdo :)

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


wishiwasalilbittaller
Regular Member


Date Joined Dec 2005
Total Posts : 20
   Posted 9/4/2008 12:54 PM (GMT -7)   
thanks for your help. am still waiting for my appointment with the surgeon but thats the British National Health Service for you!
31 year old female from Birmingham UK.
Diagnosed with Crohns in Oct 2000
Currently taking Asacol, vit supplements, acidophilus
Not feeling too bad at the mo - apart from the pain in the bum!


Miss UK
Regular Member


Date Joined Oct 2007
Total Posts : 128
   Posted 9/5/2008 8:19 AM (GMT -7)   
Hello I'm due a resection and also my bladder and lady parts has fused to my bowel too so I understand that horrific leakage thing! redface
I'm also waiting, still! for an operation.  As a fellow Brit I just wanted to wish you the best of luck with yours

BuzyBum
Regular Member


Date Joined Feb 2004
Total Posts : 122
   Posted 9/5/2008 9:04 AM (GMT -7)   
I was just about to post about the mucous drainage I am having, I've had it in the past but not quite as bad as it is now. It's just coming out all day and all night. It's really getting me down. I didn't realise it could be a fistula. I had a colonoscopy a couple of months ago (since when it has got alot worse) but they didn't say anything about a fistula. Is it always a fistula if you have mucous drainage? Is it likely to get better on it's own?


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 9/5/2008 11:24 AM (GMT -7)   
BuzyBum--fistulas aren't likely to get better on their own...does your doc know about it? You may want to let him/her know it's worse and see what their course of action is.

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 9/5/2008 12:24 PM (GMT -7)   
another technique i use to deal with the nasty....a couple pantiliners in my underwear...and I am a guy!

i agree, for problems like fistulas, there is no support system better than this site!!!! i feel your frustration...and I would not be scared away from an intimate relationship with someone else who also suffers as i do....so, please try not to let the whole deal damage your confidence too much!
"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?


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6050
   Posted 9/5/2008 6:42 PM (GMT -7)   
hey you wishIwas and missuk, there no complaing about goverment run healthcare! why one of our politacal parties ahs that as a main goal for this country. any complaining about long waits and bad service wont get them very far....... just kidding of course ! ;0)... the more our country hears about things like that, the better chance we have of staving it off. like " my dad died waiting for his operation , but heck it was gonna be free!"
randynoguts 



     http://www.geocities.com/randynogutsweb/


Jackson17
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 2/21/2011 3:50 PM (GMT -7)   
Sorry, but it is against forum rules to promote our own websites on this forum.

If you like, you can contact the site administrator and tell him about your site, and he may choose to include it in his "Crohn's Disease Resources" section.

Best wishes,

Ivy

Post Edited By Moderator (ivy6) : 2/21/2011 4:36:17 PM (GMT-7)


Jackson17
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 2/22/2011 4:03 PM (GMT -7)   
Hi Ivy, thanks I will email the site administrator. Just for the record, I wasn't trying to promote my website, i was just trying to help other people with fistulas, and I guess the more information and support they get, the better... I obviously don't make money off my website so don't need to promote it, just spreading the word and trying to help :)

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/22/2011 4:46 PM (GMT -7)   
I did think you were genuine, Jackson, but still, rules is rules...

If you get a chance, could you please pop over to the earthquake thread and tell us how you (and your family) are? I know you may not be in Chriswtchurch, but am concerned for you nonetheless. It's a sad time for NZ (and for those of us in Aus, who are very upset for & with you).

Sorry to hijack the thread - back to fistulas now :-).
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

jury2
New Member


Date Joined Jul 2011
Total Posts : 18
   Posted 8/3/2011 9:25 PM (GMT -7)   
I had a fistula and have a seton. My does not leak like everyone else's. Is something wrong with mine?

HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 8/4/2011 4:30 AM (GMT -7)   
I have had one fistula (and may have a new one???). yes, that drainage thing was what finally got me to care for mine. Same thoughts on the gauze and the pantiliners here. Mine was to the skin so I do not have info on your potential surgery. I like the list of questions above especially the getting the name of the procedure. I found that is helpful if you are trying to communicate with a new doctor about past proceudres and if you need to discuss with your GP or others who have not read your full OP report.
I also always ask what is the normal range of time for recovery at every procedure I have.
I am wishing you well and let us know how plans are going

Jury....how long have you had your seton in? My draingage cleared up pretty quickly with antibiotics and the seton. The seton is supposed to help keep you draining until you are "cleaned out". You may want to check in with the surgeon that placed your seton to make sure if it is recent. If you have had it a long time...this seems a good sign.
Still holding on with just Pentasa! Doc says most of my problems are side effects of my resection ('91) and my disease is doing GREAT and no sign of a repeat fistula. Meds now to control the lack of TI and happy to be out and about.

jury2
New Member


Date Joined Jul 2011
Total Posts : 18
   Posted 8/4/2011 7:41 AM (GMT -7)   
Hi got my Seton in on July 12 after having it lanced and drained the week before.  It drained for a few days after the Seton was placed in.  I was on Cipro and Flagyl for 10 days.  Am now on long term Cipro and Prednisone.

hrsallee
Regular Member


Date Joined Nov 2005
Total Posts : 38
   Posted 11/25/2011 5:37 PM (GMT -7)   
Jury I also have cd with fistulas... How did they put the seton in. R u on any pain meds???

foxy48
New Member


Date Joined Aug 2010
Total Posts : 6
   Posted 5/12/2012 5:48 PM (GMT -7)   
Fistula healed!! One of my screen names for another forum is hope4.

"Faith is the confidence that what we Hope4 will actually happen; it gives us assurance about things we cannot see." Heb 11:1

Since I got my abscess almost two years ago, I went through so much mental and emotional ups and downs. Depression for a few months and then acceptance of the whole thing. I always felt like I was living in one of my nightmares and couldn't wake up. But then again I have seen and heard worse online and on this forum. SI prayed for all of you. And hoped for healing for all of us. And so I finally accepted this disease, but was not going to give up on HOPE4 complete healing. Even if it was going to be sometime in the far future.

So 2 years ago a CRS placed the seton and I remember the her telling me something about incontinence, and that she didn't want to risk that for me. When I asked her "when can it be removed?" She looked at me like I was asking the hardest question in the world. She didn't have an answer. Then a year later the other CRS told me to leave it alone. I too kept asking "Why did I let this happen. How could I have prevented it. And many tears later I just decided to accept it and be glad it was not worse. But definitely hating it every bit of the way, but also glad that it made me a more humble person. I had a lot of faith that I would eventually heal, somehow. But didn't know how. I still had some hope things would get better, but didn't have any idea how. I truly believed it would be in the far future, but how far?


I realized the seton needed to be there to heal the fistula (which was as large as a man's fist) but now that the fistula seemed pretty much healed the seton keep it from completely healing, right? I mean how can it heal completely with a seton there? My seton was not very thick and it was made of satin.

But, I have to tell you all YESTERDAY, just yesterday I realized something!! I didn't feel the seton like I normally do. Like I feel it irritating my skin. I feel it poking me sometimes. I sometimes bleed a little. It hurts sometimes (stinging sensations), but the last few days I felt nothing. Like it was gone! How? I thought they stayed there until a surgeon removed it? No one would touch me! I felt like a prisoner with the seton in me at times.

So I was very scared because my hope was growing and I didn't want to be disappointed. But I finally decided to get to the bottom of all this. I was going to feel for it as I normally do in the shower. So I did. And guess what? It was gone!!!!!! My seton is gone!!!!! It must have fallen out a few days ago I guess. Probably in the toilet during a long wiping session (as usual). I remember about a month ago it seemed to be hanging lower than normal. I even accidently yanked on it a bit by accident and boy did that hurt! And it bleed, and anyway, I was having issues again with it poking me and making me uncomfortable. So I decided to try and push the hanging part back inside a bit. That helped, but it would keep falling out again.

I am guessing one of the knots somehow loosened? Or maybe the seton began to fall apart? I don't know what happened but all I can say is "thank you Jesus!!" My hope was not in vain!

I feel no pain. No irritation. No bleeding. I don't think there is any drainage either, but not 100% sure. I haven't worn a gauze all day today and so far I feel no skin irritation so far. I am still in shock. I am still in awe. I feel that this is what I have prayed for for 2 years. I remember praying "God just take it out yourself. Let it just come out on it's own, please!" and my prayer finally came to pass. I am so happy!!!! I hope I am not celebrating too soon because I realize that CSR's probably believe I could get another abscess but somehow I don't believe that. I believe I am healed. And to top it off I am on a special diet for Crohns. I have been for over 2 years. And it keeps my symptoms away (except when I majorly cheated and got the abscess almost 2 years ago).

Anyway, I want to tell you that though I don't know all your situations exactly, I think that there is hope for you too. Maybe you don't have to have surgery (i never did) Maybe you just need time to heal? Maybe if you change your diet too it could help you heal? I made major changes without drugs and I am better. I feel like I just woke up from my fistula nightmare!!! I hope to God that I never get another abscess and I am going to keep hoping. But for now. I am forever healed of it. I believe!!

Love you all, and hope you all don't have to suffer much longer!

Defibril8
New Member


Date Joined May 2012
Total Posts : 11
   Posted 5/14/2012 12:10 PM (GMT -7)   
I'm not 100% certain but I would think that you would have to have a colostomy done at least temporarily so I would definately ask if you will have one and an estimate of how long before it will be reversed. It's not much but I would start there. Oh one other thing that was a surprise to me when I awoke from my resection...will you have a tube in your nose going into the stomach?? My guess would be yes. Good luck.

Post Edited (Defibril8) : 5/14/2012 1:14:49 PM (GMT-6)


Defibril8
New Member


Date Joined May 2012
Total Posts : 11
   Posted 5/14/2012 12:28 PM (GMT -7)   
foxy48 said...
Fistula healed!! One of my screen names for another forum is hope4.

"Faith is the confidence that what we Hope4 will actually happen; it gives us assurance about things we cannot see." Heb 11:1

WOW! With your amazing faith and energy I'm surprised it took so long. I don't know you but I couldn't be happier for you if you were my own family. God has blessed you. Thanks for the enthusiastic message.
 

ren755
New Member


Date Joined Nov 2012
Total Posts : 2
   Posted 11/22/2012 2:59 PM (GMT -7)   
ren755
Hi everyone,l;m just new to this site.I have been dealing with this fistula problem for over a year now.I'm having my third surgery tomorrow,l guess l signed for three possible procedures,l don't know what will be done until the colorectal surgeon goes in.I will let you know the outcome.Wish me luck!!!

dinkley
Regular Member


Date Joined Feb 2010
Total Posts : 108
   Posted 11/26/2012 11:41 AM (GMT -7)   
Good luck ren755 - let us know what happens. I have a pouch-vag. fistula and have had a seton in since June this year. Still draining a bit, but no more blood. My C/R surgeon (very well known, very experienced) does not think mine can be fixed with meds or with a plug or patch, etc., so I am dismayed. I'm very interested in hearing which surgeries you've had, and what you have had done on this third round.

OneEyedChicklet
Regular Member


Date Joined Jun 2011
Total Posts : 33
   Posted 11/26/2012 9:10 PM (GMT -7)   
I have a rectovaginal fistula that also has at least 2 other branches. The first abscess (which occurred 1 week after I felt the fistula happen, though I didn't know what it was at the time) started in 2009. Since May of 2011, I've had 11 or 12 procedures to try to figure this thing out/heal it. My surgeon was able to seal off one branch with a LIFT procedure, though that was accidental, as at the time, he was insistent that I only had the one. To date, we've tried Fibrin Glue, 2 plugs, 2 LIFT procedures, and rectal advancement flap (which was just done Nov 9th). At this point, I'm out of options until science catches up. The problem with mine is location, because it runs between both layers of sphincter muscle. No cutting setons for me, unless I want to add incontinence to my list of problems!

At any rate, I'm not trying to vent, but to add my voice to others in letting the OP know that they aren't alone. Wishiwas, my main advice for you is to read, read, read. Get the specific type of surgery and Google it. Focus mainly on surgical journals and studies if you can. Get your surgeon to sketch it out for you (mine did). Keep trying as long as you can, and don't let a failed attempt get you down. Science will catch up, it HAS to.

I wish you the best!
Diagnosed November 2008, but symptoms for 10 years prior, misdiagnosed as spastic colon.
Currently dealing with rectovaginal fistula, had LIFT procedure August 24th, discovered that I had 2 fistulas 8/26, so now I'm waiting to heal so I
can deal with that one!
Meds: Tried and failed with Pentasa, Asacol, Prednisone, LDN, Remi. Currently on Humira.
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