Help.Fistula pain

[taraswede]

I have a peri-anal fistula that is a right pain in the ass(pun intended!)

It hurts to sit on it, even when laying down I feel an immense pressure pain from there, and especially if I have any stomach attacks, which has been a lot lately. Actually had a few bad months..

I couldn't get into to see my new gastroenteroligist because she went away for the holidays and I don't see her until January.2. She was just waiting for a clear chest X-ray to possibly put me on remicade.


But in the mean time, I'm in immense pain. Not like myself at all...of course no pity parties over here, but just crying on the couch. My bum feels like a separate entity in itself and I so badly just want to cut it out right now just to relieve the pressure and pain and burning feeling ( which feels like there a huge hot pole up my bum) I can't go on like this but will going to the emergency room do anything? My reg. doctor told me to make an appointment with my gasto. And gave me a high dose of prednisone but she didn't know what to do but I don't want to go on prednisone again without knowing the right schedule to go on and dose and if that would interfere with my gastro's remicade plan and the walk-in clinic doctor didn't know either just took one look at my face and wrote me a prescription for Tylenol 3's and says he doesn't know anymore so I don't know what to do!
Will an emergency room help? Or will they just give me Tylenol 3's, tell me to book with my doctor and send me on my merry way too? Please help...I'm 24,used to be so full of life and now, i feel I'm just an empty shell full of pain...I have a great life just can't enjoy it, especially with my crohns side pain and this peri anal fistula....it is just too sore and burning to ignore...and all I do is wake up to pop Tylenol 3's to get through the day barely to go to sleep and start it all over again .....ahh this is no life! The life of a crohnie:frown:

 

[Sailorluna]

Do you have a seton? Is your fistula draining? Extreme pain that is not related to a recent draining can indicate a new abscess or that your existing fistula track is backing up or starting a new track. Do you have a a CR surgeon you can call? My CR surgeon knows more about fistula issues than any GI I have had and is my first call if the fistula is a problem.

Do you have a fever? My trips to the ER for fistula/abscess issues have always been after fevers. Generally they involve a ct scan and iv antibiotics while waiting to be seen by a CR surgeon.

Fistula pain for me is usually best addressed with heat. Hot bath, heating pad, hot water bottle whatever is handy.

Good luck. If you get a fever that is hard to control or lasts long go to the ER it is an indication that you have another abscess.

 

[Annie_0827]

I have had the exact symptoms and pain level and know what you mean about wanting to cut it open. I just joined this forum yesterday and wrote my story today and said the same thing! I am so sorry that you are going through that. I had to have surgery on the abscess back in august and a tube was put in so the infection could drain out. It is much better right now but I can still feel my skin being so tight and sore to touch. Please find a good doc and get second opinions if need be. No one else is going to advocate for your health so you have to I am waiting on getting remicade treatment approved through insurance. Im scared to death but need relief! Good luck to you and feel free to ask me any questions you want.

 

[Lili]

Hi I'm new to this forum and I just recently had a takedown. About a week after my colostomy was taken down, I started some stool leakage thru my vagina. It started burning really bad. It seems like it bothers me more when I eat. I was diagnosed with crohns over 18 years ago. I had a really bad attack which a portion of my intestines were cut out, and my bowels were temporary rested, suppose to have been a year, but I was so devastated that I didn't go back til this November 2013. Now I'm having the stool leakage and the barium enema test showed a hole from my vagina to my anus which is believed to be a fitsula. I go see a g.i on jan 9 due to holidays. Seems to me the doc whom reversed my colostomy should have immediately hospitalized me and took care of the problem, but I was referred to specialist in Davis ca at u.c Davis hospital. What can I do to help relieve the pain, can medication make this problem go away. I'm willing to take or do whatever I can for now to elevate this burning pain. I need help ASAP, and my appt isn't till January 9th

 

[Annie_0827]

Fistulas are extremely painful and I'm sorry you are hurting
I have a fistula as well and in Aug I got a huge abscess that kept getting bigger and more painful. The only thing that helped was going to the hospital. I had surgery to drain the abscess and pain meds were my savior. Good luck to you and don't be afraid to go to the hospital if your pain continues.

 

[If*]

Hello, do any of you have a sitz bath? If not ask you Dr. for one or see if you can buy one. They are soothing for the area ~ used with warm water and Epsom salt. Also see about being given a peri bottle for helping keep the area clean.
Try not to wipe the area but rather clean with water and pat with a dry clean cotton cloth. I refuse to use wipes as most have alcohol and can hurt. Barrier paste can trap bacteria.
Super sorry any are in pain ~ it will get better.

 

[Sailorluna]

I use calmoseptine cream to protect the skin down there. I have had a vag fistula for years and there is not a lot they can do. I had a seton drain for a few months and then they removed it. It has continued to drain on and off. There is no easy fix.

Some people have a flap procedure but that is not always successful and can cause more damage if it does not go well. It can really depend on how bad the inflammation is in the area. My surgeon suggests wearing a lite tampon when the drainage is causing me issues. I do sometimes but no often for fear of infection although he didn't think it was a worry.

Good luck, I hope you find some relief.

 

[taraswede]

Hi lili and Annie,

I feel for your pain both of you! No one really knows what we go through or can emphasize with us without feeling what we do! With these fistulas, these feel like so much pressure and pain, it feels like a separate entity down there!

Lili, I feel for you that you don't have an appointment til later...if possible, get one sooner, get on the cancellation list and tell them it's urgent! I wish I had done that....but luckily I am going to mine finally tomorrow finally! She's my new gi and so far, is excellent and one of the heads of gastro at the hospital so hoping something gets done!

Annie feel freed private message me if you like...welcome to the forum where you can talk freely and openly about crohns and use words like fistula, anal itching, and bum feels like it can explode, without feeling embarrassed! This is a great network!

 

[lgpcarter]

I found taking Flagyl and Cipro REALLY helps my perianal disease and cuts down on the draining from my fistulas. Flagyl makes me feel miserable overall though, (nausea, lack of appetite, dizzy), so a big trade off.

Frequent sitz baths with Epsom salt help too.

Sorry you are in this miserable club. But at least we are in it together, right?

 

[Sonya]

oh, i read all your posts and it sounds like you're writing about my life.
i had fistula/abscess problems for 4 years now. Became resistant to Cipro and so the abscess grew out of control...had emergency surgery to drain it.
It's been 6 weeks since my surgery and there is no light at the end of the tunnel.
Still have a 5cm wound and i have to get it re-packed every other day.
Looks like it's not healing well and possibly infected and another abscess forming.
i'm feeling really alone and hopeless. I'm sorry to hear that you are experiencing this awful stuff but it's nice to talk to people that understand.