Just Need a Good Cry...

[Cookie]

I am here at work and I have all of these frustrations just piling up and I just want to have a good cry on someone's shoulder, but I don't know who to bother with it, so I chose YOU GUYS!

So, as some of you may remember, I have been dealing with a rectovaginal fistula situation for a good 5 or more years. After trying various drug treatments without success, I had my second surgery in October. I was given odds of a 50-70% chance that it heal for good. Although I have been seeing signs over the past month that there might be a problem, I think I was in denial, hoping that maybe I was still healing from the surgery, or possibly imagining the symptoms. Well, today when I went to the bathroom I pretty much confirmed beyond a doubt that my fistula is back.

I just am beside myself. In not so many words, my surgeon pretty much told me that if the surgery doesn't work, I will just have to deal with it. As in...forever??? That is easy for her to say. Does she know how humiliating it is to be in this situation??? Even though my husband is supportive, I know he has to be grossed out by the whole situation. I can't even bring myself to talk about it with my girlfriends. I just want to scream! I just want to cry! I just want it to be GONE!!!


Thanks for listening.

 

[imisspopcorn]

Oh Shadycat......I am so sorry honey. Fistulas are horrible. Call the surgeon and see if you can get in to see him. Just have it checked out to see if something can be done. Don't give up....At times, it feels as though things are never going to get better, but they do improve....We all are here for you, so have a good cry.

 

[D Bergy]

I am out of my element here, but are these fistulas internal or external?

I am sorry you have such a lousy symptom as this.

Dan

 

[Peaches]

Dern Shady!! I'm sorry buddy - that sucks! I can only imagine how frustrated you must be right now - and upset. How much does one person have to go through with this disease? I would definitely call your GI so she can take a peek to see if there is anything whatsoever she can do for you. I wish wish wish I could make it go away for you :O( You can cry on our shoulders - we don't mind!!

 

[beth]

That is just soo not fair. You can cry on my shoulder.. I'll just pass it on to the Bears tonight. They don't mind a few tears.

(((hugs)))

 

[Trysha]

Hello Shadycat
very sorry to hear of the awful situation that you are having to deal with.
Is it possible for you to get other opinions?
Have you ever tried low dose naltraxone?
D. Bergey on this forum has a wealth of information on this and it might be worth a try if it is possible.
He can tell you all about it.
This is a dreadful illness to contend with and we need all the medical support we can get.
It sounds as if you are not the recipient of such.
Lotsof hugs
annsplash

 

[forum contributor]

I'm sorry, hun

I wish I had any advice to offer, but I don't.

Instead, I'll just give you hugs!

 

[Cookie]

Thanks for all of the hugs guys. It makes me feel so much better already. Annsplash, I have not tried LDN...is it good for healing fistulas? I will have to search the threads. I have sought a second opinion from a different GI. They both referred me to a surgeon. My first (and current) GI had me try Remicade and Imuran and then he wanted to try Humira after my first surgery failed. That is when I went to see a new GI. He referred me to a new surgeon, so this surgery was done by a different surgeon than the first. I'm not sure where to go from here...maybe I will give the Humira a try.

 

[shazamataz]

Hey Shady, so sorry to hea of your troubles I hope you can get it sorted. I cannot imagine what it must be like for you!
Feel free to vent and cry away here, that's what we are all here for!

((((HUGS)))))

 

[dustydshook]

I am sorry Shady about the trouble you are having. I have had uncontrolled flair for two years now. Started Humira 7 weeks ago and have been without pain in my stomach for going on three weeks now. It has been absolute bliss. Although i have developed joint pain and eye problems but i will take them over the belly pain anyday. I have never had a fistula. If you do go the Humira route go with the syringes instead of the pens they are way less painfull.

 

[Crohn's 35]

HI Shadycat, that really sucks that it hasnt been that long since your surgery and it is back... I understand how you feel, truely I do. My second surgery, resection, I had no relief from the beginning, and I went all through that hell and it didnt do anything. I know now I had a very bad surgeon. He also operated when I was infected, so it go worse.

I have never had a fistula (knock on wood) but having any kind of surgery and have it come back just really hits you mentally and of course, phsyically. I cried so much then and it is good for you to have a good cry. I am hoping that you find a way to get rid of the fistula, and out of discomfort. You need a big hug!!! Hang in there, always let us know how you are doing ok?

Pen

 

[Guest]

i'm so sorry to hear this... you must be at breaking point, i know i would be.

i 2nd what's been said already.. get another opinion, preferably a GI who's not seen you before.. would it be possible to phone around different hospitals and talk to each GI's secretary about your fistula problem before you book to see anyone - try and find the one who sounds the most experienced in this...?

good luck. there has to be a solution to this out there... you'll find it, just keep on keeping on, don't give up, and come and cry to us whenever you need. ((hugs))

 

[DMS]

Sorry to hear that you are dealing with a fistula for that long, how frustrating that must be for you.
I have done a lot of research on fistulas as my son has one also, (I'm sure you have too). How are you feeling other than the fistula? It's my personal belief that the fistula can not heal until you start healing internally. Mitch's fistula got continuously worse (from March until August) and his blood work also showed lots of inflammation, hemoglobin and liver function was low - just not good all around.
In July he started SCD and in August LDN, his blood work showed great improvement (almost normal everything) after 5 weeks of being on LDN, and then his fistula started to heal. We are not there yet, but week by week it is getting better and he is feeling really good - no other signs of Crohn's at all. He tells me it will be gone by spring break - I hope to be able to report that it is.

I just wanted to let you know how LDN has been working for his fistula in case you were thinking of trying it.
There is also a new drug coming down the pipeline called AST-120, or Kremezin. Our GI expects that it will be available within 2 years, it is specifically for fistualizing Crohn's - it is one that I'm keeping close tabs on.

Good luck with whatever decision you make, I hope you find something that heals your fistula really soon.

 

[fenway1971]

I wish I knew what to say. So, instead I'll offer hugs!

 

[Peaches]

Still thinking about you Shady - hoping you are feeling even just a smidgy better today!

 

[chelli]

:sorry:

 

[Cookie]

Thanks to all of you guys for your advice and support...each and every one of you is a blessing. I felt better the minute I hit "submit post" just by getting it off my chest, but after reading all of your comments and cyper hugs, I feel like I am ready to deal with this. I just have to sit down and decide what is my next step. Thanks again...you guys truly are the best!

 

[Crohn's 35]

Some relief is better than no relief! Sometimes you feel lost and then you come on here and everyone helps because they KNOW your fears and pain. We are always there for you! Hugs!

 

[farm]

 

[Miss Rose]

Just sorry to hear what you are going through - keep strong. Sending hugs.

 

[Jerman]

So sorry you are going through such a rough time right now. I hope that you are able to find a resolution soon. Good Luck.