Hello,
I have never joined message board in my life but I am hoping that this helps.
Before I get into my story, I guess I need to preface this with saying that I am in a terrible point in my life. Without this medical issue, I would still be deeply depressed. I have no home where I feel comfortable, I don't have many resources, and my hours at work just got cut down to very, very part time, so missing work isn't an option for me. Also, I don't have Crohn's disease, I have super regular bowel movements and no stomach pains. I have a touch of acid reflux that is perfectly controlled with prilosec.
I started to experience rectal pain at the end of July. I finally went into an urgent care center at the beginning of August, and was told that nothing was wrong with me and if I wanted to, I could follow up with a general surgeon in case there was an abscess. I went into the surgeon, and within two minutes he had a syringe in me pulling out a few CCs of puss. He then poked me with another needle and said "oh, I just made it bleed more. But you will be fine in a couple days" and sent me on my way. (Nothing else was draining out because he NEVER
opened it up) I wasn't fine, and I had flown out of state by the time I realized that it was not fixed. I went to the ER, had a CT scan, was told that there was probably some abscess left, but all they could see was inflammation and was referred to a collorectal. He then properly drained the abscess by cutting off some skin, forcing it to stay
open. But, by that time, I could already see the fistula (it was next to where he cut, and it filled with blood after he cut
open the abscess..but wasn't broken through the skin yet). He should have seen it, but didn't. Sent me on my way, never once warned me of a fistula.
After a few weeks I knew that something was wrong because I was draining from where he had cut still and also draining from where the fistula that
opened up. I was in constant pain and wasn't able to sit and do any work. I went to a highly referred collorectal who got me into an MRI the next morning, told me to go to the ER because they would take care of it. Went, and they didn't. But I was told that I do have two fistulas and that they just have to do surgery and I will be fine, and that all the agonizing pain I am experiencing will go away after surgery.
Well, I demanded to get into surgery ASAP, met the new collorectal in the surgery room, asked if I would have to get a seton and was told that it was highly unlikely and that I have just had a "terrible run of bad luck." I woke up to being told that they did place a seton, and they performed a partial fistulatomy. They connected the two fistulas via fistulatomy, then put a seton through that. This whole experience has been awful for so many reasons. The doctors offer no sympathy, and right now I am told to come back in 4 weeks to then see what needs to be done, but that I will be guaranteed more surgery, it is just a matter of how many and when. And to make matters worse, I don't live in a situation where I can take baths (or use the toilet with a sitz bath).
I keep being reminded that I am healthy and that I will be fixed, but I am in constant pain with NO escape. When will I be fixed!? I can't sit to do anything, including driving. I can't escape mentally because my "home" is the source of most of my stress. I am feeling completely hopeless, and no doctors are giving me answers. They just throw pain meds at me that don't help me one bit. I need to know what the options are - I need to actually talk to the collorectal and know when things are going to happen. I feel like I have completely lost myself these past two months and I just want myself back...please help, I am past the end of my rope. I just want to give up on it all.
What can I do to help with the pain, mentally and physically? What can I do to help me heal as fast as possible? I have two HUGE job interviews this week and cannot imagine them going well. I am so desperate for relief.
Thanks
Post Edited (Kepler) : 9/21/2014 1:00:50 PM (GMT-6)