I need advice! temp ileostomy to heal fistula

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maimmie

maimmie

Joined
Aug 12, 2011
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So I have recto vaginal fistulas and they have not responded to treatment with meds. I'm currently taking Humera weekly aswell as cipro and flagyl.
My GI doesnt seem to know what else to do for me so he refered me to a surgeon.
I met with the surgeon yesterday and he seems to think my best option is temporary ileostomy to allow the fistulas to heal.
So I really need to hear from other people who have been through something similar. how was the experience of having the temporary ileostomy? how long did it take for everything to heal? how about after reconnection?
I'm really scared and overwhelmed by all of this. It seems to me eveything is going to get alot worse before it gets better...
One other thing i'm wondering about is that my GI has also refered me to another GI to see if there is anything else he can do for me. He may have access to drug trials for new biologic meds that my current GI does not. Am
I wasting time seeing the other GI? am I delaying the inevitable of having surgery?
I don't know, part of me just wants to know I explored every option before having a bag. It seems like a last resort to me.
I was even thinking about seeing a naturopathic doctor to see if they could help me.
I'm sorry for the long post, I'm just thinking about alot of stuff.

Thanks in advance for any advice or info
Amy

P.S. this is my first post for advice but I have been a member of the site for a bit and have found reading other peoples experience so helpful!
 
Welcome! I think you should find that having a temp ileo may be a great thing in the short term. It will hopefully give you time to heal up.

How long have you been on Humira and the other meds now?
 
I never think it's a bad idea to explore every option. The way I see it, it won't hurt you to see the other GI and see what they have to say.

And on the fistula front, I have a recto-vaginal one as well, and while it's not active now (I have a permanent colostomy) it's still there. It doesn't bother me at all, but I think if I had the option to be reconnected (which I don't), it would act up again. So make sure you ask about that as well. I'm not doing anything about it because it doesn't hurt or have any discharge from it or cause me any discomfort.

Good luck to you! These decisions are always hard, but arm yourself with as much information as you can and try and make an informed decision.

Welcome to the forum :)
 
Totally agree with Cindy.

You can never waste time by getting as much info and finding out all of your options before making a decision.
I have a temp bag but its from UC not Crohns so can only say I don't regret doing it. I made sure I tried all the available treatments first, it was what i wanted to do for my own peace of mind. I do not for one second regret having the bag, it saved my life, but you need to do what is right for you. Sadly only you can answer that.
I wish you well and good luck with whatever you choose.
Please keep us posted. Lots of support can be found on here. These guys have saved my sanity more than once!

Xxxxxxxxxx
 
I have a temp bag after having my colon yanked from UC. I will probably have it reversed in another month or so, as I am set up for J-pouch reconnection. Right now I feel so darned good with the bag that I would rather not have the reversal, but I also feel like I should at least try it out before sticking with the bag permanently. My GI also sent me to another GI for a second opinion before colectomy. It is always good to hear someone else's perspective. In the end, I went ahead with surgery and I am loving life with the bag! ...and before surgery, I never thought I would say that!!!!!!
 
i think the temp ileo is a good idea to let things heal. i had a recto-vag fistula myself and would of had a temp ileo but my colon was too damaged i got a permanent one instead. i'm 9 months post surgery and its hard to know when the fistula healed exactly but it was around 2/3months ago.

by all means wait and see if there are other options, surgery was tough but for me it was a blessing in disguise.

good luck! hannah.x
 
Hey! I would definitely explore my options, if I were you. I have been in your exact situation and I decided to get a permanent ostomy. I also had terrible flares all the time. I had most of my large bowel, anus, rectum and 50 cm of small bowel removed. I definitely think having a bag is so much better than what I had before. In my opinion, I would rather have a situation I can control and care for properly than have fistulas constantly leaking, and painful and not being able to have sex etc. There's no denying its a massive decision though. Here's an awesome site to help you get an idea about what it's like with a stoma. Www.stomaatje.com that site helped me a ton :)

Anyway hope you are feeling okay and try an keep positive! :) x
 
Thanks to everyone for the great responses!
It sounds like surgery has been a good thing for everyone and not the end of the world as I've been seeing it.
I still intend to explore all other options since it would be nice to avoid more surgery.
(I had a right hemi-colectomy in april 2010)
I was in so much pain before that surgery and could barely eat anything.
Its just so frustrating that my insides almost never hurt now and I can eat but my bum and surrounding area has apparently decided to fall apart. :(
wouldnt it be nice to go places and not immediately have to find the bathroom!
And I know my hubby, though understanding, would really like to have sex again!
i'd also really like to have a second child and the surgeon said the best time to do it would be while I had the ileostomy. has anyone experienced pregnancy with one?
 
So glad I found this post (I am a newbie here, still learning how all this works on the site).

I currently have a temp. ileostomy to help heal a r.v. fistula. This is the 2nd time I've gone through this to heal one... and actually, worth it. I didn't have one for 10 years after the first one repaired (again - had ostomy to repair it). I had surgery in Aug of last year (2011) because of having a rectol-vaginal fistula and I had a subsequent surgery in Jan to help it heal more since the ostomy alone wasn't doing it. It is healing... I am looking at reconnection hopefully late summer.

I feel great... never sick.. not in any pain... and it's getting "healthy" down there. Everything is scarring over and healing. It's not 100 percent yet and I may even have to have a "flap" surgery where they basically make a patch from my own tissue to make sure the opening is closed. At this point, and with an ostomy, I'm willing to go through "whatever" to get it fixed.

As far as getting pg w/ a bag. Yes. 12 years ago- when I was still married - I did become pregnant 2x while I had a bag. I miscarried but that was more about my body and something wrong with the baby than anything having to do w/ the bag. There are ways to be "naturally you" even with one in place.

I have more I could share with you if you're interested, but you can let me know. I welcome the contact.

Also, after the ostomy surgery in Aug., I kept a daily journal for the first 60 days upon returning home from the hospital. I wanted to document each day and how I felt, what I was dealing with, what I learned ... what was hard, good, helpful. What was working, what wasn't. If you have any interest, I could share some of that with you...

I wish you all the best and would love to help if I can.
 
Sorry to hear of your troubles Amy. I had a temporary ileostomy because of abscesses in my small bowel. it was the only option available to allow healing and yes we tried meds and drainage etc first. Unlike most people I found the ileostomy to be a real pain but mainly because I had an extremely high output stoma so had trouble with the bag filling quickly then coming off (once in the change room of a shop!!!!) having to empty it twice during the night or it owuld come off in bed (messy) then also all the usual problems of burning and ulcers around the stoma. That said, most people dont seem to have many problems with ileostomys and many much prefer life with them. And of course they are lifesaving. So definitely explore other options but don't be too worried if you do have to have a temp. ileostomy. I had no major problems after the ileostomy was reversed until a flare up and abscess recurrence 9 months later and thats just due to my crohns not anything to do with the ileostomy. Not sure about pregnancy and ileostomys, i imagine the main problem would be having to change types of bags etc as your stoma would change as your tummy grew but a helpful stoma nurse would guide you thru all that.I'm sure other members will know more than me about all of that.
I'd be interested in what you learn about new drug trials etc as that is the way i'm heading-so keep in touch and all the best with everything.
 
I had no trouble making the decision to get the temp ileo - I was on my last legs.

I have really struggled psychologically with having it though. I've had active disease on it - so have been in constant pain until recently. Humira has cleared this up.

I've had no problems with leakages, blow outs - all the usual bothers people seem to have. I've just had a real problem getting my head around it. My appointment to arrange my reversal is not until July. I'm bringing it forward to exactly 3 months after having started Humira. The Humira is working really well - so I want the bag gone.
 
Hi, I too had issues with recto-vag fistula, and then got pregnant as they started to flare up....it was a Nightmare as I couldn't take any of the regular medication that you would normally to help heal them up. I ended up having two abcesses drains under anesthetic at 8 and 13 weeks prg!!! It turned out that I had a tumour growing down there and was diagnosed with colorectal cancer at 28 weeks. I delivered my little (3lbs 15 oz) Sawyer at 34 weeks, he's now 6 months and doing great. I had the sx for a permanent ileostomy in Nov and honestly I should have done it years ago...but I was so horrified at the thought of a permanent bag that I always said no (I am 35 now and thought that I couldn't deal with the esthetics of it....).

I'm trying to keep this short....lol. Being pregnant with active disease and leaking fistula was Horrible, remember that there is a lot of added pressure down there with a baby, and I have read many places that women with ileostomies have healthy babies. Also I like a lot of people am sooooo happy and healthy with my Ostomy. (I am technically cancer free since my sx, but doing profilactic chemo just in case, so maybe not quite a 100% yet). And I know my fiance is much happier having sec without potentially hurting me or getting some gross pus etc... On him (sorry if that's a bit graphic).

I just want to mention that I am NOT in ANY way suggesting that you are risking cancer if you don't have surgery. I had a full colectomy and then reattachment with a j pouch when I was 9 - and 11 so I have had active disease in the rectal region for 24 years.

In the end you will make the right decision for you, and however it goes there's all of us here to discuss/vent etc....with.

All the best :ghug:

Kat
 
Hey Everyone!
Thank you all again for all the responses!
I'm a little frustrated right now because I found out I won't be seeing the new specialist until the end of july. I'm sick of living this way! I'm getting so sick of dealing with the grossness of it all.
I'm wondering if I should just go back to the surgeon and get this proccess underway already, since I might end up back there anyway.
I'm torn!
I mean I'd really love to see if there is a way to fix all this without going through multiple surgeries and having to deal with a stoma. But on the other hand I might go see the other doctor and he might recomend surgery as my only option anyway and I'll just have wasted time and delayed my healing and getting on with my life. I want to get off these antibiotics so I could maybe have a drink once in a while and I want to be able to have sex without it hurting or just being too gross!
UGH!! I just don't know!
 
I dont have an answer for you. But waiting til July while you are suffering is an awfully long time! If you did get into the surgeon sooner, would he be able to push your appt with the GI up any quicker?
 
Do you have IBD – Crohn’s or UC? I have Crohn’s in my colon and none healing wound post fistula surgery and was told by many doctors that if I have a temp. Bag to heal my wound, because of Crohn’s re attaching may not work as the tissue in my colon is inflamed/diseased. Make sure you talk about this with your docs; it would be a shame to go through this big surgery just to find out you can’t reverse ostomy. On the other hand, it maybe just as well to just have ostomy and be done with this fistula for good.
 
Exit, I have crohns and they will reverse me. And I'm an old tart of 50. Normally they dont like to reverse if there is disease in the rectum, that is true. If your rectum is good, they can usually reverse. (usually being the operative word) Thats why its soooo important we take care of our wee beastie the bum. :redface:
 
Sorry, I guess I never said! I was diagnosed with Crohn's 7 years ago and was recently told its actually Crohn's and Colitis.
But I got what I consider to be a bit of good news the other day! I may be getting into a drug trial!
I meet with the woman running it on monday to discuss everything and then I'll have to go through all the usual tests (blood, stool, colonoscopy) and go off humira and report my symptoms for a bit so they can decide if i qualify for the drug trial.
I'm pretty excited about this because I feel like its a new hope for avoiding sugery. on the other hand I'm nervous about going off my currents meds and getting worse over that time and then after that what if they decide I'm not sick enough for the drug trial.
another big thing that bothers me is that I met with this woman before and choose not to go into the drug trial because I had to commit to not getting pregnant during and for 6 months after the drug trial. at the time i wasn't as sick and thought I'd be able to find a quicker fix and go back to trying to have a second child.
I guess for the time being another baby is just not in the cards. I obviously have to worry about my health first so I can be a better mom to the son I have now.

I think I just talked myself in a bit of a circle! lol
Anyway, thank you for all the advice and support guys! this is a great website!
Wish me luck that this new drug is the answer I've been looking for!
 
Good luck with the drug trial and keep us all updated with how it goes and what it entails. I really hope it all works out for you. My fingers are crossed.
 
I thought I should come and give an update here. I seem to have forgotten I started this thread and have since posted new ones complaining about my continued problems.

So I'm in a clinical trial right now for a drug called vedoluzimab. I've had two infusions, which are recieved once a month and my third infusion is on friday. They say it can take 3-6 infusions to see if the drug works.
I was right to worry about going off humira during the screening proccess. I got much sicker and developed new fistulas. i almost didnt make it to the first infusion. I was in very bad shape. the only thing that got me there was prednisone.
I've definitely put myself through plenty more suffering so far. I'm worse off at this point then I was when I started this thread.
My only hope is that the infusions start to work soon and I can get off of awful prednisone.
I've made another appointment with the surgeon and see him on Aug. 27th.
I have a feeling hes going to look at me and tell me stoma is my only option now.
I'm really trying to get my brain around this and get comfortable with it. Maybe its what I should have done four months ago, after all.
I've had a rough couple of weeks. I havent been able to leave the house because of needing to be near a bathroom incase my bowels decide to evactuate.
sometimes because of the rectovaginal fistula i have no warning and no time.
I actually can't believe I've been living like this for so long now!
the biggest frustration i that if I have to have surgery I cant participate in the drug trial anymore and so i dont know what kind of meds they would put me on to keep me healthy after sugery.
If i had just had surgery when it was fist suggested I'd be well into healing at this point and not too sick to take my son places. he starts junior kindergarten in a couple of weeks and I'm worried about being healthy enough to get him ready and get him there. Not to mention this summer has been a total bust since I've been house bound for most of it.
I'm in a bit of a down place right now, feeling sorry for myself and thinking i may have made some wrong decisions about my treatment.
sorry to be a downer guys.
I'm still really thankful for this forum and to be able to read about everyones experiences. it reminds me that no matter what I will live and get through it like we all always do.
 
I was just reading this post out of interest in fistulas, because those are some of my main issues at the moment. I've never dealt with a rectovaginal one... yet. And I've never dealt with a stoma, the doctor's say my disease is too widespread in too many places, and it would probably return very quickly anyway.

Anyway, my point is that I read your last update post, and you expressed so many of the same things that I have been going through the last few months. I'm completely off meds because they all failed to work for me. I've been in this flare for about a year, and i've been SICK, to the point of not leaving the house and frequent surgeries for about four months. I'm a momma too, and I beat myself up all the time for not being the mom she deserves. Then I tell myself there are so many worse parents out there who don't have to deal with a fraction of the things we deal with every single day, with a smile on our faces! We do the best we can with what we've got.

Private message me anytime. Sounds like we're both homebound these days and could use a friend who actually understands.
-Ally
 
maimmie said:
I havent been able to leave the house because of needing to be near a bathroom incase my bowels decide to evactuate.
sometimes because of the rectovaginal fistula i have no warning and no time.
I actually can't believe I've been living like this for so long now!


Oh maimmie,
How I can sympathise with you on this exact point. I think i am actually looking forward to only having one spot to poo from, and having a bag to catch it. my rectovaginal fistula has caused me all sorts of discomfort and embarassment, and I truley despise it!

Hope fully on friday they will take it all away. Still not overjoyed at the idea of a permanent iliestomy, but am trying to keep positive and remembering why I am doing it and what i will gain from it.

I do hope you manage to get sorted soon. Trust me I know what those retchard fistulas do to both your body and you mind.

Sending big hugs.
Janette
Click to expand...
 
maimmie and ali, my thoughts go out to both of you. I'm in a similar position of having tried and failed all the meds and getting recurrent intestinal abscesses meaning months of hospital - cant operate cos to widespread and fragile - same old!@#$. BUT what i wanted to say to both of you is that all children need is love and security - my twins, who turn 21 at the end of the month are both the most fabulous people, strong and resilient and i think this is partly that they have had to be because I have not always been able to do things for them or attend events etc etc. What I have done is always given them lots of love. I truly think they are stronger and better people for seeing and putting up with my health problems. Still doesn't change for you the disappointment when you cant do something but know they won't suffer - only you. All the best to both of you and let me know how you get on.
:heart:Anna
 
I was diagnosed with crohn's 13 years ago, was in remission for 11 of them. 2 years ago I had a flare up and I'm still dealing with it. Was on many meds and nothing seemed to be working. I was talked into a temp. Illeostomy the beginning of this year. They said it will help heal the crohn's (which is in my colon). They said I would be able to live like a normal person once I had it and would be able to have it reversed in 4 to 6 months! They said I would only be in the hospital 3-5 days after the surgery and back to work on 2 to 3 weeks! WRONG!! I had the Illeostomy surgery on March 16th, was in the hospital for 9 days with a ton of complications, was sent home then 3 days later was admitted again for and infection to the right on my stoma all the way to my back and PAINFUL! Ended up finding that I had a fistula just below my stomach liner in my stoma and feces was leaking in there was causing the infection, in for 10 more days.....come to find out the stoma nurse used a cathater tube to relieve the liquid and poked a hole in the stoma..REALLY???? Now the infection is under control, was sent home agian only to return 5 days later because and abscess popped it's ugly head thru my stomach wall right next to my stomach and yup.....feces coming out of there to.....back in the hospital for another 11 days and another surgery to "fix" the stoma!!! Till this day I have had nothing but problems with this Illeostomy. It's now hurniated to the extent I need to wear a hernia belt and now I have 2 wounds around the stoma that hurt like hell and are causing leaking!!! SO tired of it.....wish I never had it done and cannot wait to have it reversed!! It's hard for me to sit and or walk as it's very painful. I try not to wear the belt but then I feel like I have a soccor ball hanging off my belly!!! I'm actually going for a second opinion in a couple of weeks in Boston, Ma to a crohn's and colitis center, as I don't think I should be going thru all of this and husband is just about going out of his mind too!! I am jealous of the people who have not had any problems, maybe I'm just one of the lucky few!! Oh and I was out of work for 3 months, 2 weeks he said...ya right!!! On a good note.....aside from the problems I am having with my Illeostomy, I am feeling much better on the crohn's side so on that note I'm hoping it's almost in remission and I can have to god forsaken Illeostomy reversed!!
Good luck to you and whatever choice you make with your Illeostomy!!
 
I see you have received a lot of support, I thought I would let you know that I completely know what is happening to you , cause it's happening to me right now too.
I did the illeostomy for two years, MRI said all the fistulas had closed, reconnected on aug/2011 by the 2 week mark starting leaking in my hoohaa again, so now I'm going on remicade again to see if it will help, I've been told that the flap surgery is the worst pain you could feel and is why my GI said no way. I just set up an obgyn appt to see if they can do anything cause I'm going out of my freaking mind. Nothing takes away the dirty feeling. So on that note you are not alone......hang in and if I find out anything I will for sure let you know.........cheers:hug
 
I experienced recto-vaginal fistula as well as sacral/gluteal. I have a temp ileostomy. Well, it was initially a temp. But I've had it for 3yrs because I love not having to deal with multiple BMs and stool coming out of orifices it wasn't intended to. I was tired of the perineal pain. Remicade didn't work. My surgeon told me its difficult to heal a fistula in that area because stool keeps passing thru. Which in turn causes more irritation. It's a viscous circle. If you do decide to go thru with the surgery, make sure you consult with an ostomy nurse!! They can really assist you in pre/post op care of your new stoma. My surgery was emergent, due to multiple obstructions and vomitting stool. I wish I was given the opportunity for surgery a lot sooner. Hope whatever choice you make turns out for the best!!
 
Klutytacey, what a nightmare you have had. I hope everything sorts itself out eventually, and quickly. Hopefully the second opinion will shed some light on the situation. Good luck.
 
Thunderstruck, good for you studying for your ET licensure. How fabulous it would be to have a stoma nurse who had actually had one and understood all the problems and how painful a simple thing like a leaking stoma can be. Well done. The nurses try but unless you've been there........
 
Heya,
The one medication that actually stopped my fistulas in their track was Inflixamab. Sadly after the 5th dose I had a very bad reaction. I am now on Humira however happy to say the fistulas have not come back. I do have a seaton stitch in me which will remain there for the rest of my life holding one fistula open, but all in all, it was the miracle medication that actually worked! As for the Humira its very new so I dont know if it is working! Sadly the inflammation has increased since taking it so only time will tell!
 
Inflixamab is remicade, right? I unfortunately have tried that already aswell. I was on it for a year and it worked great for me but I stopped taking it when i got pregnant with my son and when i tried to go back on it after my pregnancy i had a bad reaction. Oh how I wish I could be taking it now since it is supposed to be so great for fistulas. :(
 
Yea its Remicade! Sorry about your reaction! I know how it feels, its horrible! My sister is actually on it as well, she had a reaction however they tried again but they mixed it with I think saline and slowed it down. Takes twice as long but her body is tolerating it now? Do you think you could try that? How are you finding the Humira? I was supposed to take mine yesterday but Im feeling very ill right now so Ill do it today in stead! I hate it, hurts like hell and so far though its taken the stomach pains away it seems to have created a monster pain! Oh crohns disease! gotta love it eh!
 
sorry to resurrect an old thread, but this is kind of my question too. i had a fistula that came out right beside my vagina. it branched off and created another hole further up my labia, but then i got on remicade, and it closed the branch, but not the original. i just had surgery last week (flap) for the original hole, but now it appears it has branched off into my vagina (or another has opened up). the surgeon wants to do a temp illeostomy (which i would be fine with), but then she wants to do some horribly complicated surgery on top of that where they put muscles from my leg between the vagina and the rectum?? i was wondering if it's possible the fistula could heal up simply from getting the bag and not having anything go through, or a combo of upping my remicade and a bag? i really don't want another major surgery on top of the one i just did, and a stoma. any thoughts?
 
I had a recto-vaginal fistula I had permanent ileosuomy surgery. I asked the surgeon if I need any surgery done to the fistula he said "no once the crohns is removed from the colon there's nothing feeding the fistula and it will heal itself" and that's what it did. I would ask for any alternatives to the leg surgery if this is worrying you. Mine may have only been through the tissue and not muscle I'm not sure.
Good luck. Xxx
 
i guess i could go ahead and get the ostomy and then just have them hold off on the other surgery to see if they would heal up on their own.
 
It's certainly worth discussing this approach with your surgeon. She will probably raise the issue of your possibly having to have two lots of anaesthetic instead of one, but you need to talk out the pros and cons with her. Do you have a gastroenterologist as well? If so, have you discussed it with him/her?
 
unfortunately i live in a small town where the doctors aren't very good. i like my GI, but he isn't the most knowledgable, but at least he knows it, and isn't afraid to say so. lol. my surgery was done 5 hours away. i'm a little concerned because the surgeon is already talking about cutting again, and they dont want to do an mri or ct or anything. and its not like they can do an exam on me right now because i just had surgery.
i had an mri done for the original fistula at a different place, and they saw it on the scan, so i know it can be done and seen.
i have hope that maybe they could heal if there just wasn't stuff going through them. i had a branch heal when i first started the remicade.
 
maimmie said:
Thanks to everyone for the great responses!
It sounds like surgery has been a good thing for everyone and not the end of the world as I've been seeing it.
I still intend to explore all other options since it would be nice to avoid more surgery.
(I had a right hemi-colectomy in april 2010)
I was in so much pain before that surgery and could barely eat anything.
Its just so frustrating that my insides almost never hurt now and I can eat but my bum and surrounding area has apparently decided to fall apart. :(
wouldnt it be nice to go places and not immediately have to find the bathroom!
And I know my hubby, though understanding, would really like to have sex again!
i'd also really like to have a second child and the surgeon said the best time to do it would be while I had the ileostomy. has anyone experienced pregnancy with one?
Click to expand...


hi I know this is a post from a long time ago but I'm taken a back at how we are in the exact same situation I right now have a temporary ileostomy from having a rectovaginal fistula I was curious what ended up happening for you, and how things went? right now I'm in the hospital and it looks as though my ileostomy has developed a fistula I've got pus draining out of my stoma babe put in a train but it seems now the blood and pus is draining equally into the drain and into my bag I was just wondering if you had any complications and what ended up happening for you?
 
Hi there,

I am sorry to hear that your having problems. Sorry it has taken a little to get back to you. How are you feeling? So the temporary ileostomy that I had was a pain. I actually had some leakage through the sides of the stoma which caused the bag not to sit right which caused acids to irritate the skin around the opening. The dr said that this was fine though so I just kinda stuck with it. Very annoying and painful at times. That was really the only complication I had with the stoma. I do have a fistula but it kinda weaves between the front of me and the back. I do have issue with it but it had never effected the stoma area. Other then that the actual stoma worked ok.
What are the doctors saying? I have now had my ileostomy reversed and it has been two years. Though I still have bathroom issues, and now vagina issues due to the fistula, my crohns seems to be at bay for now and knock on wood that is where it will stay.
The best advice I can give you is to just stay positive. Joke and laugh about the horrific and silly issues you will have with the bag because I promise you once you have it reversed it will all seem like a dream. Hopefully you will be stronger for it as well.
I am happy to answer any further questions you have about what I experienced. Just pop me a line.
Honestly the reversal was the best thing I had ever done :)
Megs
 

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