PAIN and i can't take it anymore!!!

[maimmie]

Can anyone tell me how to deal with my pain from fistulas??

I have several holes on and around my labia and a couple on my bum. They hurt so much when I have a bm and pass gas but also just cause pain when moving, sitting, standing, laying down, pretty much all the time!

I'm waiting to hear if i can get into a clinical trial for a new drug since both remicade and humira have failed me. I've been trying to avoid having an ileotsomy but at this point i'm thinking it may be my only option.
No matter what happens in the mean time I have aweful pain to deal with that is stopping me from living any sort of life, eating for fear of when it comes out and make it hard to care for my three year old son.
Any tips on how to avoid just screaming and pulling my hair out would be very appreciated!

I can't live like this anymore!:sign0085:

p.s. i also have at least one recto vaginal fistula but that doesnt hurt so I can deal with that.

 

[Grumbletum]

Hi Maimmie
I am so sorry to hear you are having these problems. It sounds awful :-( I'm sure someone with more experience than me of these types of fistula will be along soon with advice.
Do you use sitz baths? The ileostomy has been suggested I guess to give bowel rest, so I'm wondering if a liquid supplement type diet might be worth trying?

 

[Sailorluna]

I am sorry to hear about the constant pain. I have two fistulas but only one causes pain at this point - it sounds like you are far beyond where I am at. For me pain relief is a hot bath and if that is not convenient I sit on a heating pad. For pain pills I have leftover oxycodone from a previous abscess draining and tylonal. Sometimes I sneak in some ibuprofens even though I know it is bad.
For me it gets worse when the d ramps up and calms down if I can keep the bms solid.

I agree that it may be worth looking into going to a liquid diet for bowel rest. Would pred tame the inflammation down there at all? I have never been given it for mine but maybe it would help short term?

 

[maimmie]

Ya I'm on prednisone right now and I'm taking oxycocet for pain aswell. I do baths with epsom salt as often as possible, usually twice a day.
I guess I'm doing all i can at the moment, including trying to eat more liquid and soft foods. Its hard because I get hungry and then I regret eating so much when it comes out! Ive lost quite a bit of weight and was getting weak too, so I decided I needed to eat some.
I've been told my fistulas are not the kind that benifit from setons and they've always seemed to be draining quite alot all on there own.
the good news is I get to start the clinical trial tomorrow, so hopefully that drug will start them healing...
I'm just near the end of my rope.
I have an appointment with my surgeon to discuss surgery again but its not until the end of july, so i have some time that I still have to put up with the pain. Sometimes I wish I could just go to the hospital and they would just keep me and fix me, but they won't.

 

[Gra]

Dear Maimmie,

I dont have any fistulas (thank God!), but am sending my wishes, hopes and paryers that your pain will ease and you will get relief soon,

Gra

 

[ontariomom]

When i first had my fistuals they drove me insane. i had sooo much pain i couldnt do anything.

I only have two peri rectals fistuals , so what you feel must be way worse. I soaked literally after every BM in a sitz bath. Sometimes up to 10 times a day.......i used a heat pad/bag and keep it under my bum all the time. I only have T3 for pain but took them as i needed.

I feel for you!!!! i hope it gets better!!!!

 

[Jayanth]

Hey maimmie,

I feel your pain. I suffer from perianal fistulae too and it is soooo bad. Internal medicine isn't helping much and all I can see at the end of the tunnel is a colostomy . But please don't lose hope, there is some formulation somewhere just waiting for us .

Remicade & CiploxTZ with painkillers are my emergency measures. Sitting in hot water bath for 30 minutes provides some relief after a BM. Try using a squatting toilet and see if it helps.

I am trying to coax my doctor into experimenting with Inflximab+VAAFT as a combo therapy. See if that makes sense.

wish you the best.

 

[moogie]

I thought my situation was bad, I'm really sorry to hear you are suffering so.

My best wishes and I hope your trial will be good for you and quickly too.

Keep coming and talking to us. We are here for you.

 

[maimmie]

Thank you, so much everyone for your kind words! I got my new drug infusion today, so lets hope I see some healing soon!
I felt a bit lucky today talking to another patient recieving the treatment that was having to have her fistulas packed daily. I've never had to have mine drained or packed, they drain on their own. It sounds like a painful proccess and I'm glad I havent had to have it done.
it could always be worse right? I feel lucky to have the opportunity to try this new drug!

 

[dgg]

I feel your pain. I also have suffered horribly from my fistula. Have you tried the fentanyl patch for pain? I also took lots of baths and sitz baths. What is the new medication you are trying? I have also been on remicade for almost 3 years and my fistula still hasn't healed. My doctor wants me to give it a few more months if adding imuran and if I still don't heal I will likely get a stoma. Not what I hoped for but if it will allow my fistula to heal I will go forward. Good luck... I also have toddlers and know how hard this can be as a mom. All you want to do is feel okay and it's so hard when you have pain. Good luck and know it will get better!

 

[Keepingfaith]

I deffinately know the feeling! I have a rectovaginal fistula(been in the hospital before for a whole month because of it last year) that loves to open up out of no where. It got so bad I had to wear a pad because of the stool leaking out of my *woman parts*. So disgusting!

Have you tried Cimzia? It's a biologic that I recently started so I can get rid of this flare & hopefully the fistula for good. Cipro & Flagyl have been helping me lately also but I'm sure your GI has alread RX them for you before.

All the advice I can give is: EPSOM SALT BATHS! I take a few a day & it feels *so* good. Also, there is a cream that you can only get at Walgreens & you have to ask for it behind the counter in the pharmacy part. It is called Calaseptine cream & it is used specifically for fistulas/rectovaginal issues. I love it! I think you can order it online or ask the pharmacy to order it for you if you don't have a Walgreens near you. It's deffinately worth asking about!

http://www.calmoseptineointment.com/

There is some info on the cream ^^

I hope you get some relief!

 

[maimmie]

I don't think Cimzia is available in Canada
The only approved Biologics are Humira and remicade. Thats why I'm in the drug trial. I'm embarassed to say I can't remember the name of the new drug I'm taking.
I'll be seeing if the cream is available somewhere around here though.
I've been taking cipro and flagyl for what seems like forever and I'm not sure they are doing much.
One day after my first teatment of the new drug and I feel a bit better, I think! it could just be the prednisone kicking in, but only time will tell! fingers crossed!