Recto-Vaginal Fistulas - Part 5

Hi Ladies,

It's CJ... I haven't posted in awhile. I wanted to let you know about my surgery.


After 6 years, I had my first surgery on June 17 for the RVF. The CRS found an absess while he did a flap repair. I was all fine for a little over 2 weeks. Then I passed gas through my vagina. I got so upset that I got diarrhea and then started passing stool through the vagina. The next morning I had a fever and I called the doctor. This was on a Sunday. He called in an antibiotic and told me to come to this office the next day. I mentioned to him that I had felt a little consitpated the day before and had a large BM. He said I may have popped a stitch.

I went into his offict the next day and he said he wanted me back at the hospital in 2 days so he could go back and look and see if he could restitch. So I did and everything seemed fine and he restitched. I went home that day from the hospital and stayed in bed for 3 days and remained on a liquid diet. After 3 days I felt the urge to poop but didn't want to push unless I was really sure. Then I started leaking stool from my rectum. Finally that night I had a BM, and the next day I had another one. It was mushy so it wasn't constipation but I did feel clogged up. I don't know if I messed things up or not... but the next day I am almost positive I passed some gas. I am still on a liquid diet and there have been 2 other times now where I felt as though I have passed gas vaginally again. I keep hoping it's just air... but I know more than likely that isn't the case.

I just don't understand why this is happening and why it is so difficult for us all to have this fixed!! I know it is not the end of the world and I could have a worse health problem, but it makes me so sad that I have worked so hard to recover from this and then it doesn't work. I am a teacher and I feel like this has been the worst summer for me being able to spend time with my children. I haven't called the doctor yet to tell him that I think I am passing gas again... because I don't think there is anything he can do at this point. Before he did the restitching he said that if they couldn't do anything that I would have to wait a few months before they could try again. I keep trying to tell myself that I dealt with this for 6 years and that I can continue to manage this problem until it can be attempted to fix again!

Sorry such a long wordy email... but I just had to vent. I know that God has a plan for my life and that HE is in control and for whatever reason I have to go through this right now.

~CJ

Beegirl,

I was reading through some of your old posts and you said after you got your ileostomy you still had stool leaking through your fistula at times. Did you have gas too? Do you think your fistula has closed up without having another surgery? I guess I am just trying to be hopeful thinking that my fistula could close on it's own after surgery. I don't have an ileo or anything...but if you read my last post you'll read what recently happened to me and that I am passing gas since my surgery.

~CJ

Blueeyes-i am pretty tired, but wanted to take a second to say that you are not alone. I have been dealing with this for almost two years... and understand your frustration.... I wanted to say that before I went to sleep and will write more soon.... Be good, B

Hi CJ,
I am very sorry to hear your news, Sadly I think most of posting on this site know this type of experience very well - the inital euphoria at the operation and the chance of something happening and then the gradual let down as it fails. Our experiences are all different but I had mine for 2 years before having any surgery and even getting to have surgery felt like a result but two years later I know it is all very much more complicated than that. Your despair - I feel for you so much - it is awful and the thing which is the worse about the RVF - as you say there are much worse things to have wrong - is the psychological and emotional cost. many of us are either in therapy, on pills or both for that reason. Please feel to rant on this site because we have all felt it. I want to hug you. One of the good things about having the stoma was having an opeartion where my body actually healed! I began to think that my body had something wrong with its chemistry that it couldn't heal. And yet the stoma healed easily and while it hasn't resulted in the RVF going away yet I'm sure it is helping. I don't pass much gas through the fistula now but still pass stool when I have a bm.

The Dr is right that you will have to wait for the next attempt at reapir and re-stitching. The hope that you have is that you seem to be just passing gas. You never know - it could still heal. The diet issue is also tricky - too constipated and you pop stitches, too runny and it will leak through any gaps in the repair. I think this si where the stoma helps.

Anyway the only thing I can say is read the post from the guest a couple up from these posts. If that guest is re-reading - thank you for your post. I do despair of getting healed and hearing of someone who has had real problems but is now fixed is great. Thank you v much for posting. CJ - that is our hope. Hang in there and don't be hard on yourself if it gets to you. The situation is really horrible.

Beegirl and Penny I hope you are OK. I've been off work for a few days feeling dizzy - great! But feel a little better now.
Bea

Blueyes (jess)-okay, my daughter is sleeping so i have a few minutes to write...I know this is horrible, but try to focus on what is truly important...what you love, what will get you through these hard times because this is a long process. But don't give up Hope, did you read the guest's response....many women recover after many attempts. What have your dr. tried? I had one flap repair failed, then the ileo and another layered approach vaginally. I know it is super small, but I am nervous the little b****r is still there, Relentless...ha. I am a little oler than you 32.

I will know in august.

What is the next step? WHen? Don't give up hope, Jess, you can do this!!!!!!!!!!!!! B

CJ-I am sorry you are having setbacks.. Have you thought about the ostomy??? that could aid the healing, I am a teacher too. Be good, B

Hey Bea and Penny!!! Bea when is your surgery?

B

Hi Blueeyes,
APologies for not saying Hi last time - the posts on this site sometimes take a while to come up and in a funny order and I didn't see yours and couldn't understand who Beegirl was talking to. I can't improve on what B has said except to re-iterate that it seems that people get there in the end. Hang in there and rant to us on this site. We know how it feels.

B - op is due on 10 August. Hoping swine flu doesn't get there first though! Yours must be up soon? I'm thinking of you.
Bea

Hey Ladies,

Bea- Thank you for your encouraging email! : )

I spoke to my doctor today to tell him that I have gas coming through. He said that since I don't have stool that is a good sign. He basically said that we would have to wait and see if it just heals on it's own (which I doubt). Then go back in there and talk about what to do. He said if I started passing a lot of stool and couldn't live with it then I may need a colostomy. I guess I just need to see what happens. I am trying to stay positive and be thankful that I don't have breast cancer or a brain tumour or something more serious.

Beegirl- when you had your second repair (the transvaginal repair)... did it not work? I know you keep saying you hope the fistula is smaller and not there when you go back for surgery. I was just wondering then if that meant your repair failed.

I don't understand the colostomy at all. I understand it is a bag that your bm drains into... but I don't understand how it is hooked up to your stomach.

I go see the doctor Tuesday and we will talk more about what to do about my situation.

I am thankful that I can talk to you all. My family and friends know that I have problems down there from childbirth but they don't know my symptoms. I am just too embarassed to tell them and honestly I think it's okay that they don't know everything.

Okay, I will talk to you all soon,
CJ

Bea,

The fifth...of august.... we're gonna get there...B

CJ-

When I say that "I hope it is gone." I mean that during the healing process there were a few times when fecal matter did come out of it--even though I have an ileostomy, the stuff that was still in my intestines and stuff that bypassed came out... with the ostomy, you still get mucous, you feel like you have to have a bm and then mucous comes out...lately, that comes out the right way...Yippeeeee! Before it would have come out both ways...my rvf was big... anyway, when my dr. inspected the area he said he saw no signs of a fistula that it looks like it healed... but he said there is a chance that it is very small and he would not know that until he went in to do the surgery...

does that help? So (with ostomy) it may heal. Penny's healed over time with her ostomy too.

look up ostomy on-line then you can see what they look like that is probably the best way to visualize it.

Hang in there, and know we totally understand. CJ also keep living your life because this is a long tedious journey and worrying will weigh you done.

B

Beegirl,

Do you mean the fecal matter came out of your vagina? Did you get any vaginal gas? That's what I have and that's how I know something is wrong again.

Thanks for your support. I did look up things on colostomy and ileo... does part of your intesine hang out of your stomach?? I don't know that I could handle that. How do you deal with this at work? Do a lot of people know?

~CJ

Hi all. I've been out of the loop since my first posting. Not much has changed since then....still passing stool and gas through my RVF. I finished the antibiotics my surgeon gave me when I noticed the fistula had reappeared, and ended up with a yeast infection. I have an appointment with my CRS in August to follow up on everything and am very curious to see if this is a reopening of the first fistula, or if it is a new one caused by the surgery. We'll see.

Just wanted to check in and thank you all for continuing the thread. Even though I haven't written, you have all continued to be so helpful. Blueeyes, welcome and I'm so sorry that you're dealing with this. I know what you mean about feeling like you've lost a year with your baby. My little girl just turned eight months and I feel like I've been robbed - ESPECIALLY of the last two months following surgery. I'm back on my feet more and more everyday now though, and am determined to live as normal a life as I can. Hang in there. We'll all get through this.

Stay strong,
RLWmom

Hello Everyone !! I had my colostomy done Tues 7-14, we opted for that vs the ileo and we did a cut end one instead of loop to prevent any sneaky stool from traveling south to the fistulas area.....So far so good, I named the stoma Stella and she was burping and erupting Wed morning by 7 a.m..........15 hours after the surgery!, so the ET nurse came in, actually a floor nurse and I had to empty the bag before she even got there.....she showed and pretty much had me change out the whole system, my husband and 19 yr old daughter learned too, started eating light, toast, lots of fluids and walked and listened to Stella grumble...........went home Wed night around 7 p.m.

It's not as bad as I thought, I haven't felt sorry or cried for myself .....it's kinda interesting and sad to say, a relief not to have to spend hours in bathroom cleaning out the RVF all the time...or making a mad dash to potty when urges hit. Still very swelled at the stoma site, but taking it very easy, the CO has finally gotten out of me from the lapro surgery....My surgeon actually flushed the lower colon out thru the rectum after he made the stoma, and then flushed out the fistulas too, one of them is quite tiny, hoping that one heals and the RVF one is a bigger one, so we will wait to see what happens there. Right now, I am eating better than I have in 6 months, have a brighter outlook on this...........So Bea, you were right, not so bad.........getting this diverting ostomy isn't the end of the world, I am so sick of hospitals, surgeries, I just want to take a break and maybe live a little before I decide to have the reversal and another repair attempt for the RVF....Dr said this can stay up to 2 years, after that it's pretty much permanent due to the end cut type I had done. I sure hope everyone is doing well and to the other newbies......this is a great site to vent, ask questions and learn......Thanks to everone......Flower !

Hi Flower and RLWMom,
Good to hear form you both.
FLower - you acted fast! You sound boyed up by the decision and it is true that there are considerable benefits to having the stoma when you've been used to the fistula. Your swelling will go down a lot over time. I can get into clothes I wore before the stoma now, but it took little while. The worst of the swelling goes down in a couple of weeks but I'd say up to 3 monthts both the stoma and stomach continued to get smaller. Stella will get much quieter - the worst is those first few days.
Anyway, I'm glad everything has gone well. Keep your spirits up. The closed end should help the fistulas to heal.
Keep us posted.

RLW MOM - sorry things are still continuing for you. I hope you saw the post from a guest telling of how she got there in the end. These are things we all need to hear.

Take care all.
Bea

Hi Bea ! Got my first shipment of supplies and of course they didn't give me the pouches w the filters.....next time I'm told, so if I have to I can "burp" these if needed.....You know i went to a general surgeon to have this done and like I said, he did a colostomy with a cut end, where my CRS wanted an ileo w a loop, so I think and most would agree, yes? that any chance on this earth that these two b****r of fistulas of healing are greater w a colostomy cut end vs the other......I mean there is absolutley NO stool passing thru there now, I am flushing them out everyday, taking chewable kids vitamins, vit C, antibiod for 5 days and gnawing on my benefiber as usual to help gel up my runny stools. So for the first time I am hopeful and feel like on the right track. When do you know when to go back in to try another repair attempt on the rvf?

RLW....my newer fistula, the one that drove me to the colostomy, was a result of the attempted fix on the existing rvf one...It was like I was snowballing from one to the next......thanksfully the new one, a perianal one is quite tiny and we are looking for it to heal, the nasty one, remains to be seen....Keep your chin up!

flower

Hi Ladies, I read a bit back someone was looking for a positive response. Back a few months ago I had given my success story.
I had the repair done (found out I had the fistula 5 days afer a HORRENDOUS birth). I got the repair done a month after my son was born and it is 7 months later now. The repair was a success, but having sex is immensely painful. I am told to go to physical therapy. it is a VERY person question but is anyone having pain after this surgery?? =( Will I ever be normal again?

Other than that...I went to a specialist in Cambridge, MA...they were incredibly empathetic to my situation and scheduled me as soon as they could and i have had great follow ups w/ the dr. The fistula is healed though sometimes I wonder if gas is coming through just a tad...or just my worries kicking in and I am imagining it. The big thing is, it is healed, nothing is coming through and the dr was amazing.
I am so glad we have this site. I wish there was a formal site w/ this type of information going back and forth.

If you have any info regarding my first question or have any questions - please respond. Looks like when you write they ping your email.
Good luck to you all.
-C