Oh my god

[Mama & Mac]

I feel like a complete ass!
I wrote my most embarrassing issues in the wrong place for the forum to read.....and I wonder why I only got advise from 2 ladies...oh my god! See newbies really should read what to do before they go spilling everything.

I have edited my thread but I'm not sure if that removes it.
I wanted to know if any other ladies have had vaginal fistulas...yes that is what I posted......I could really use some advice on this......I'm having stool coming out and my surgeon seems to not want to fix the problem........any advice would be greatly appreciated.:sign0085:

 

[Rebecca85]

Firstly, don't worry about spilling your most embarrassing secrets on the forum. It's actually pretty hard to shock us- read a few threads and most of them are about poop in one form or another!

As for the fistulas, I haven't had any. But I do know that the biologicals can help to close fistulas, so that might be an avenue to explore if your surgeon is dead set on not operating. Just out of interest what reason did he give? Or is he just being an ass, in which case get a second opinion!

 

[Mama & Mac]

Hi thank you,
She said that it might not work, but for me that just doesn't seem like a good enough answer, sometime I wonder if it would take her getting something like this it have any sympathy for anyone, she is a very had woman, but on the other hand she is very good at her job, I'm just not used to a woman being like a man....if you know what I mean....I will look into your advice and again I thank you for 1, taking the time to read my post and 2, for answering it.

 

[sararay]

I worked in the medical field for many years and have found that in female doctors you don't get sympathetic and nurturing women. In order to survive in a male-dominated field most of them start acting like male doctors. Also medical school is brutal and not very patient-centered.

I had a perineal fistula years ago. In that case they did a fistulectomy. Recently I had a fistula to the bladder that required a resection and bladder repair. If they can fix my bladder I don't understand why they can't fix your issue.

I agree to get a second opinion. You said it was the surgeon who said no, so were you referred by they GI? Maybe ask the GI to refer you to a different surgeon who is willing to help you.

Seriously, I don't understand it. It is NOT a good enough answer.

 

[Mama & Mac]

Thank you for the words of understanding!
Your are very correct with female surgeons today and I do understand, but also on that note, you would like to think a female would sympathize with a woman saying she has stool coming from her girly place. I will be talking about this issue with my GI, he is an awesome doctor and I would NEVER trade him in. I'm sure when he realizes just how bad it is he will help! I'm sure.
Im having a really bad flar up right now and all of my fistulas are completely out of control.

As a woman I can't stress enough just how dirty I feel, I won't let my husband touch me, and no matter how many times you shower you never feel clean, and it's really starting to cause problems.

I really hope that someone can do something to fix this, I have done the medication route and I had an ileyostomy for two years, the MRI showed the fistulas had closed.......but they didn't and within 2 weeks of my reversal it all started again.

I know everyone says they don't have time to sit in the bathroom all the time, I really don't have time for this disease..... I have a 5 year old little girl with quad spastic cerebral palsy who depends on me 100% for everything, she is confined to a wheelchair, has no use of her hands, eats via feeding tube, I'm in school with her due to separation issues and health concerns, wow I'm sorry I just turned this into a poor me thing! I really have handled this disease for 20 plus years but not handling the shit! No pun intended....that comes with it. If only I was not having the stool issue from places (well it has no place being)! I'd be ok.

Thank you for letting me go off the handle. Sorry it into a pitty party, and the post became so long.
God willing and the body able....I will beat this!

 

[sararay]

I don't know if this helps but try sitz baths with epson salt or baking soda right before intimacy. It should get out most of the bacteria and stuff. Also try different stuff with your husband. Talk to him so he doesn't feel rejected. I know it is hard, but talking helped with my husband.

We are all allowed a pity party sometimes. I know I do, but when it's over I do feel better. Hang in there.

 

[Mama & Mac]

Thank you again sararay
I will try anything at this point, so I will give it a go. It funny you should say try new things with hubby....I have been with this man for 25 years and he is a very old fashion type of man, I know he'll wait it out, but he still is a man.
Thanks again and for letting me vent.....I'm really happy I found this forum. I don't know what I did without it. Hope you are enjoying the beautiful weather.

 

[smallfry]

Hey Mama and Mac,
Hope things are better since your last post. This is my first time noticing the female section here. I've been reading and posting on the abscess/fistula section. There are a few posts there that might be helpful to you if you haven't already taken a look. It is a good idea to take sitz baths with epsom salts, the warmth will help draw things out and epsom salts will help with healing.
I have been dealing with abscesses and fistula in my recto vaginal septum. currently have a seton stitch and a tract draining without seton in my perineum. It worries me to hear that yours came back right after your ileostomy. This is what I am being presented with at the moment.
I am so thankful for these forums. It is nice to not feel so alone. I'm noticing we live pretty close too! I live in Caesarea, ontario on lake Scugog. I go to mount sinai hospital and my surgeon is female too, she can be... distant is the word I think. but as she gets to know me more she is warming up. She did a great job with my seton that's for sure.
Thank you for your post.

 

[Mama & Mac]

Hello smallfry,

Well I wonder if your surgeon is Dr Helen MacRea????
And you are right , we do live not to far from eachother.
After surgery this week and the recovery time, my GI and I are going to try Remicade AGAIN........ I hope it helps this time,......cause like I said I had the iliostomy for 2 years and was told it would fix everything..........ya not so much!! It did help the rectal fistula somewhat but not the other. We are hoping the remicade will do the trick and keep the crohn's at bay. I really hope what ever road you take it helps you, so good luck with everything.

 

[smallfry]

ding, ding, ding! You guessed it, she is my surgeon. Is it yours too? Good luck with your surgery this week!! And good luck with remicade!!
Has your GI mentioned the fact that you have more of a chance of reacting to the remicade since you have been on it before? I don't want to scare you but that is what happened to me! I now take Humira but I don't think it is helping either... anyway I have been leaning towards the temp. ostomy, I might post on the stoma page to get some feedback from others to see if anyone has had it heal up a fistula. Thanks for your feedback!! much appreciated!!
Let me know how your surgery goes, take care!

 

[Mama & Mac]

Yes she is mine as well, my GI is Dr Greenberg....... By far the best I have ever had, love the man! Yes he is hopping remicade will work better than last time, the first time I used remicade I had just given birth to my daughter and they are not sure if it could have been the hormones so out of wack?????. So we are trying again! It's been 5 years. Humria is not an option for me, due to the increased risk of cancer, I already have a very high risk, so he will not use it. Question? Have you had surgeries before? The reason I ask is my ostomy was to be temp as well and I had to fight like hell for her to reconnect me, she did everything she could do to try to keep me hooked up. When my vag fistula showed up again she told me the only way to get rid of it, is the ostomy again.......my reply hell no! I hope you find the info you are looking for, and I really hope you have better luck than I, all the best

 

[smallfry]

He is my GI as well, and yes he is good. Small world after all. I have not had any major surgery to date, only the seton install. This gives me some things to think about for sure! What was quality of life like with your ostomy? Was your pain better and were you able to function better? I'm at the point where I don't care if I poo in a bag I just want the pain gone and to be able to function better.

 

[Mama & Mac]

Wow it is a small world, ok when I was in pain, I also had seton placement, that was all I could think about too, but after having the ostomy for 2 years, I really had enough, I'm not sure if I should tell you how I felt cause it may work for you!!!! But I will tell you why it didn't for me, I still had small blockages, some pain with some foods, I did feel better and I started to gain weight. Now for the bad, I had the worst time trying to keep the bag attached to my skin ( leakages all the time) I felt dirty all the time, all the clothes that I was wearing well 1 to 1 1/2 to big, cause I didn't want anyone to see it, and if you get gas wow.... I would leak at night, yes waking up in poop ( not nice) I'm sorry to tell you all this but I wish someone had told me what I could be getting into!
I also didn't go to BBQ's that anyone was having cause as soon as I ate well the bag would fill, (do you know if it would be an iliostomy or colostomy???). The iliostomy is higher in the small bowel and causes watery stool, and the fix for that was codine for me anyway, I don't want to scare you but I just wanted to tell you the truth as I know it!!!!. But you have to do what is right for you. I hope I have helped you........good luck

 

[smallfry]

Thank you for your honesty!!! Let me know how things go for you, all the best with surgery and remicade!

 

[Mama & Mac]

Good luck to you as well