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Losing hope of healing fistula

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Posted 8/29/2010 2:42 PM (GMT 0)
Hello All, I am in very bad space for the past few days and just need a forum to "vent". I can't talk to anyone about this anymore, they don't understand and can't help and I'm tired of brining everybody down around me by "opening up" about it. I have decided after praying for healing after 8 months, that the answer to this particular prayer must be "no". "No healing for you" And I have trouble accepting that.
It's a fistula, and I have tried diets and every medicine they have given me. Every day is the same, passing stool thru the fisutula all day long. In 8 months, I've had maybe 5 good days, where it didn't hurt so much or output so constantly.

Initially, I was only working half days and have proceeded up on that regard, to full days and now full days plus more work (we are very busy). And I'm grateful to have my job. But tired of this life where I have to force myself to go to work with a smile on my face and do mywork wearing a poo-soaked pad. I have to take a break every hour to go clean up, but still, it's awful. The daily details of my life make me sick. And I KNOW it could be worse, which scares me even more.

Yesterday I had an MRI, and Wed I start remicade. Which I'm scared to do, as they held off on it till now (post hUmira- which did nothing but ruin my feet - now they tingle and hurt all the time). I had remicade 10 yrs ago, and it worked, but I wasn't so far gone, and I'm scared silly of a bad reaction this time around. They will premedicate me, and I am taking zyrtek now to prevent that, but still, scary. And I am almost wishing for death at this point, just so tired of carryiing on and not being able to do anything to change it! I guess I have lost my fight. I've tried to be positive, I've really tried, but I just can't anymore and have been crying without being able to control it since Thursday. The tears just come when they will. Shaking my fist at God, the heavens, whatever IS.
Because of the tears, my doctor sent me to a counsellor this week, and I'm on a waiting list for a 2nd visit with them so I can get on antidepressant. Three weeks more of waiting for that. Explaning this mess to a counselor was weird too. They seem to think an anti-depressant will cure everything. Well, it's not going to change the fact that I soil myself on a moment to moment basis, and my nether regions are constantly on fire. RRR. Just sending this post out, I don't know what response I hope for or even how to help myself anymore. I am off food, and just drinking water, eat to live only, to try and lower my output now. Probably a stupid plan, bit I have really had it with food, the very idea makes me sick. Has anyone come out of this place and got some hope back?

NDBC
49 year old woman w/ fistula & crohn's
off humira for 2 weeks, waiting for remicade on 9/1
on lialda, cipro, celebrex, oxycodone, lorazapam, benfiber & vitamins
Posted 8/29/2010 9:05 PM (GMT 0)
Hi NDBC,

I honestly know what you are going through.  I was excatly like you about 4 years with a fistula that just would not close up.  I spent all my time wearing pads, and soiling through pads onto my clothes.  I became very depressed and quiet honestly nearly lost the will to live.   I started on Remicade and I can honestly say it changed my life.  After the third infusion my fistula started to close and thank god has not returned since.  I am now on infusions every eight weeks.

Hopefully this will work for you.  Please try and remember you are not alone and people on this site are wonderful wonderful people with loads of information and above all they know what you are going through.

I will say a special prayer for you, please keep us updated and try if you can to stay strong.

Hope this is of some help to you   :-)

Posted 8/30/2010 1:58 AM (GMT 0)
Hello NDBC,

I too will say a prayer. I really hope remicade will be the answer for you. Sometimes in life, just when we think that we're at the end or our rope, things start to happen. I don't have any scientific explanation for that or anything, just that life often takes that course. All the best of luck to you. 

Tom.

Posted 8/30/2010 2:59 AM (GMT 0)
NDBC
Well, they say misery loves company so I hope my post doesn't make you feel worse.
I want to let you know you are not alone. I, too, have to deal with fire-butt, and people who have no clue how debilitating this is (including my gastro.. I guess some people with fistulas don't have any pain).. but ..
I have 3 fistulas. One, I have had for over 7 years. They have setons draining the pus, mucus, and blood. There is no more poo as I had a colostomy, after the remicade and humira failed to close them. Notwithstanding this, the copious discharge still feels like it is eating my skin. Some days I am so sore I can barely move. This is no way to live..

ANd I get "helpful" comments all the time, like "you sure don't look sick!". great thanks, so am I a liar, or lazy or what??

Don't stop eating. Do you have D? If you need a break, have a couple imodium to simmer things down for an hour or 2.
When things get bad (like every night) I take some painkillers and hop in the tub (with epsom salts). When I'm in the tub is the only time it doesn't hurt.
If you are itching like crazy at night, get a script for hydroxyzine. It has helped a bit.

I wish my story wasn't so depressing,, but you might get luckier than me. I hope so. If you ever need to vent to someon e who knows , and is there with you right now, just pm me and I'mm give you my email addy.
Posted 8/30/2010 3:00 AM (GMT 0)
I too hope and pray that your fistula will heal.
I have also been going through a very hard time with obstructions and I am probably going to call a few prayer lines to get my name put on prayer lists. If you haven't done so, you might want to consider it too.
Posted 8/30/2010 11:26 AM (GMT 0)
Thanks all for the support.
Roni, Funny you say about prayer lists, I am an multiple prayer lists (thanks to family members), have been on them for months. So that didn't work (yet). Yesterday, I had just lost hope.

Tara, like you said, it feels like it's burning thru the skin, just awful. I too only find relief in the bathtub, wish I could stay there all day sometimes. My fistula is draining thru vagina, so having drainage there is painful.

Keano, that's good news that the remicade worked for you. I am hoping it will work for me.
73Monte, yes you folks on this board do "get it". Like you said, I am at the end of my rope, I hope things (or my attitude) can change soon.
Thanks all for the support, I can get up & go to work & will try to make it a good day in spite of this.
Thank you, thank you, thank you!
Posted 8/30/2010 5:25 PM (GMT 0)
NDBC - I will keep you in my prayers. I hope the remicade works. Keep us posted. We care.
Posted 8/30/2010 5:58 PM (GMT 0)
Just sending hugs and support. I too know how you feel... I'm at 4 1/2 years with my fistula. I got it after Remicade quit working for me, so that's not an option for me. ;-( It is one of the most frustrating things I've dealt with. It makes me very sad and has, without question, changed me in some sad ways. I just feel icky all of the time... I just have the one fistula, but it has two tracts. One opens right alongside the vaginal opening. I'm constantly sitting with a heating pad. I rely on pain meds because my rectal area always hurts *so* badly. I am single and the idea of dating like this is not enticing. And, like Tara says, people don't think about it because we "don't look sick." It's so upsetting...

Tara - how long have you had your colostomy? I guess that they left your rectum since you still have the fistula? Do they expect it to heal now that it's not being used?

NDBC - I pray that the Remicade heals up your fistula and you can begin to live life again! Hugs!
Posted 8/30/2010 8:48 PM (GMT 0)
Had several fistulas, including 1 life threatening one burrowing into the bladder. Had those operated. Had a periannal fistula too that eventually closed by itself. By sphinter is on fire many times, I always keep it clean with a soothing liquid called Balneol, used also Tucks pads but since they have witch hazel they tend to sting.

In my case I avoid surgery for two years, but my quality of life was intolerable, so I took the plunge and took care of the surgery on the ileum and colon fistulas. After two months recovery I did not experience those conditions for years and years. So surgery may be your way out of this, wish that I could offer more.
Posted 8/31/2010 5:16 AM (GMT 0)
sr5599- I got the colostomy September of last year.. They thought that it would help heal my colon to have colonic rest due to no bm passage thru..they were wrong.
Now my colo-rectal surgeon is talking about doing a permanent colostomy without removing the rectum. She mentioned something about stapling something off and leaving just the rectal stump intact. Her reasoning was that I would never heal if it all was removed and would just be one huge open sore and nothing but problems.

Right now I am still not convinced- I've tried everything they tell me including remi, humira and this colostomy as each one was supposed to be the ticket. Now I am a bit more skeptical- and they can't put my colon back in...
Posted 8/31/2010 12:18 PM (GMT 0)
Tara28~you may want to seek a second opinion regarding not removing the rectal stump...Many of us have had perianal fistulas that have healed once the rectum was removed. You would still have issues with the fistulas since the stump would still be diseased and would also produce mucous...not to mention having to be on meds for that:(

I had a temporary ileo for more than 8 years because my fistulas were so bad...weren't as bad with the temp ileo but still drained and those setons were a pain! When drugs stopped working I had it removed and couldn't be happier!

NDBC~I am sorry to hear you are having such problems...I know they can really wear down on us:( Please don't stop eating/getting nutrients! Has your doctor given you any other options? Have you considered a second opinion for your treatment? Is surgery an option?

Please hang in there...life is hard when we have no quality...many of us have walked in those shoes and have walked out the other side. You will get though this and don't worry about venting...it does help the mind!
Posted 8/31/2010 5:17 PM (GMT 0)
Hi NDBC,

I've been having similar problems with fistulas, so please know you're not alone. I've had a rectovaginal fistula for over a year, and an abscess that turned into a fistula coming through my labia just developed in the last two months. I've done Humira injections for the last year, but haven't seen noticeable improvement from the meds.

I have some gas and drainage, but I think it could be a lot worse than it is. I follow the SCD diet as best I can, and also take in a lot of glutamine powder each day (about 30 g throughout the day, mixed in water). I really believe these things have made a difference.

I also developed a severe problem with bowel drainage earlier this year, which required constant maintenance. I had stopped the SCD diet for several months before then, and decided at that time to resume it, and be religious about my glutamine intake. This drainage improved within a couple weeks! I know the same things might not work for each person, but I wanted to share my experience.

I have an appointment next week with a colorectal surgeon, for an exam to see exactly where my fistula tracts are, before deciding on a surgical treatment. At this point, I don't know if I should just have surgery for the fistulas, or have a proctocolectomy so I can finally feel better and get my life back.

lynn024
44 yo female, Crohn's for 11 years, 2 fistulas
right hemicolectomy 3 years ago
Posted 8/31/2010 8:09 PM (GMT 0)
ndbc, don't give up hope, you still have remicade to try.

This disease can be so very tough. I'm going through a stricture right now and it's excruciating and I have small kids who need my care and attention too.

We crohnies are really strong and have to stay that way no matter what. Keep your chin up. The remicade will likely help. If not remicade, can they not do surgery?
Posted 9/1/2010 11:41 AM (GMT 0)
Hi Roni - I go for my first remicade treatment this afternoon.  Had it 10 years ago, so I hope I don't have a bad reaction to it 2nd time around.  A little nervous, but ... like the doctor said, it's risks vs benefits, and the chance of benefit is there.  Thank you all for your support. This has really been driving me out of my mind, 8 months like this, day in day out.  I am not so good with pain & unable to keep happy attitude some days.  Doctors said try Remicade, then if that doesn't work, one more drug to try (forget the name), then surgery.  If it's surgery, it will likely be permanent, he said, no reconnecting due to where the fistula is.  But who knows.  At this point, I really hope the remicade works.  

 

Hi Lynne024 - I did the scd diet for 7 weeks (didn't cheat - I didn't think I'd have the willpower, but desperation worked wonders).  But didn't see any improvement so I'm off it now.  I lost weight on it also, and now don't want to be too underweight. Maybe I should go back to it.

 

I will write after remicade - thank you all for your help & support.  this is a really tough disease.   

Posted 9/1/2010 3:58 PM (GMT 0)
I have been dealing with fistulas since the age of 10. I know where you are coming from and feel so saddened to hear when other people are going through the same thing. Every day it is so hard to keep a smile on my face, especially at work, when I feel continuously icky and uncomfortable and can never get the privacy I need in the public bathroom to take the time and get clean. Somedays I have the strength to ignore the symptoms and other days I am crying my eyes out and feel so worthless and unattractive. Thank goodness my boyfriend is completely understanding - but it effects the romance department and that alone is hard on my emotions and his. The low feelings I have had have gotten so bad that I just started to see a therapist. Not sure if its going to help matters but I'm open to anything. I've had this disease all my life so I am used to it all but this new fistula which I so luckily was given as a result of a botched surgery, came very hard on me. Its been a little over a year and there is nothing to get used to.

I have to say I did find some hope though when I went to my last surgeon visit. I have to get a 2nd resection (my first was 14 years ago) He says we can kill two birds with one stone. I can have the resection and get a temp. bag. After healing 2-3 months, go and have a fistula repair. The bag raises the chances of healing so much higher when no bacteria is running through the area. Then once the fistula heals, I can go get the bag removed. Easy Peasy. Ahhh, well I like to think so. I honestly think this will work though. I had a successful plug surgery 3 years ago so I am hoping to have positive results on this one.

Where are you located? My surgeon in NYC is one of the best in the country and really knows his stuff on this subject. You can PM me if you want his name - I highly recommend him.

Good luck with your Remicade!!!
Posted 9/1/2010 6:15 PM (GMT 0)
At one time I thought I had a vaginal fistula. I think it was likely small and cleared up with flagyl. Supposedly right before I had my resection, the radiologist saw fistulas on the SBFT. I've also dealt with anal fissures that were gushing blood. That was awful and painful too.

NDBC, I wanted to tell you not to lose hope and never stop praying. Our flesh may fail, but God is the strength of our hearts. How else could we continue the way we do? Stay strong no matter what.
Posted 9/1/2010 7:06 PM (GMT 0)
I know it can be frustrating. I had to have emergency resections had mult complications where in the end after my reversal I flared a month or so down the line and ended up with an enterocutaneous fistula..they tried all methods besides a drain in it before needing to repair it via surgery. I had that done January of 08 and been on Humira weekly since I was still flaring post op and ever since been in a mild flare but nothing too extensive that even a short 5 day bout of pred hasnt fixed and that was when I had to miss 2 weeks of Humira due to being severely ill. I go for another colonoscopy in a couple of weeks was fearing another internal fistula but I dont show all the symptoms so guess I will see but I know how frustrating they can be
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