New here-my 5 month journey of 6 surgeries for what started

Abscess/fistula

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New here-my 5 month journey of 6 surgeries for what started

Postby char2482 » 23 Sep 2015, 22:50

My problems started back in February of this year. I thought I had pulled a muscle in my bum, until my bum hole started to discharge a pus like substance. Found out it was a rather deep internal abscess after a short ER trip and then surgery a few days later when they tried to drain the internal abscess that had led me to become mildly septic. Spent three days and two nights in the hospital after that surgery. I was curious so I did some research and stumbled across information on Crohn's and how abscesses are often a symptom. I didn't really have any other symptoms. I've always had problems with constipation and stomach cramps and aches but not diarrhea. When the abscess and pain came back three weeks later I was referred to another surgeon in a town an hour away because of the close proximity to important muscles etc., and my first surgeon not feeling he was capable. We were referred to a wonderful surgeon, who is the head of the colon/rectal department of this rather large teaching hospital. He's apparently an expert on Crohn's and a fantastic surgeon. I had my 2nd surgery with this Dr's 2nd in command because it was an emergency surgery and he wasn't there. Three weeks after that surgery the abscess was still there and my Dr. decided it was time to try another route so after the draining for the 3rd time I received a nice mushroom catheter. That catheter was painful and luckily after only a week he took it out. Three weeks later I was back in the hospital for another drainage and this time he had to not only go after the abscess from the inside but also the outside. This ultimately led to a fistula. I broached the topic of Crohn's and he said it didn't look like I had any symptoms and none of my MRI or CT scans showed anything out of the ordinary other than my abscess. I decided, at the urging of a friend who is a DR to find a GI doctor in my town and see what he had to say. He also said it didn't sound like I had Crohn's because I had no symptoms and he was hesitant to do a colonoscopy because of all of my recent surgeries. The second time I saw him he found out who my surgeon was and decided to leave the colonoscopy decision in the surgeons hands because he's not only a surgeon but an expert in the field. After my 4th surgery, the one that led to the fistula, I spent a glorious 5 weeks away from the operating room. I saw my surgeon once a week for a month so he could see how I was doing and he even gave me his cell phone number so I could call if I had any questions or problems arose. He's a fantastic Doctor with amazing bedside manners. In August, my pain was still profound and it was draining constantly or not at all so pressure was always an issue and made it hard for me to work. So a 5th surgery was scheduled to put a seton in, in the hopes that it would keep the fistula open and draining and take away some pressure. That was three weeks ago. The seton is a nuisance, obviously, because of where it is and the discomfort I felt. The first two weeks were unbearable, especially after a BM, which would lead to pain so bad I could barely walk and I could only manage a walk with a limp. This last week I have had significant amounts of diarrhea, low grade fever, nausea, poor appetite, and very little drainage or discharge. My job is insisting I take a leave of absence for two weeks because of the amount of time I have missed, etc., etc. So we figured it would be a good time to do a surgery that would hopefully take care of my fistula once and for all. The Dr had mentioned some to us and I had my three week follow up with the surgeon following the placement of my seton. We got it all set up to do a fistulotomy the next Wednesday or a flap procedure if it turned out the fistula was too embedded in the muscle. However, after an exam and me pointing out a palpable mass that you could still feel where the abscess was, I had to go get another MRI the following morning to see if another abscess had formed or if it was just scar tissue, because the surgeon didn't want to perform a definitive surgery on a fistula when I very well may have an abscess that needs to be addressed first.

A very long story. I apologize, especially to those who are bored by long drawn out stories. I'm very happy with my surgeon. He is wonderful. I'm upset that the GI doctor we sought out basically washed his hands of me. My surgeon hadn't ruled Crohn's out, though he really didn't think I had it, but basically it just comes down to him not wanting to do the colonoscopy until I am healed and I won't be healed until all of these surgeries are behind me. I on the other hand, want some answers now, because I'm so tired of living in the kind of pain I have been for the past 6 months and I'd like to start treating the underlying cause instead of just the immediate symptoms. If my MRI tomorrow proves to be another abscess, I'll have to postpone the fistulotomy and have another drainage surgery. Which in turn will make me have to wait another few weeks to take my leave of absence from work, which they are insisting I take sooner rather than later because they think I will come back feeling better. They don't seem to understand that right now this is something chronic I'm dealing with and if it turns out to be Crohn's its something I will always be dealing with and taking two weeks off isn't going to magically make me all healed. I know that no one out here can give me any answers but it has been an enormous release just to type out what I'm going through and know that someone out here knows what I'm going through, and the frustration it has brought me, along with stress and strains on relationships, work, school etc. I had just moved in with my BF when all of this started, just started a graduate program to get an MBA, I'm getting ready to get promoted at work and WHAM!!! Life through me a curve ball, and I'd love nothing more than to find out why I got an abscess, instead of just being told it's "bad luck" and these things sometimes happen. Even the surgeon said he's been doing his job for 20 years and he's never seen anything like my case before. I just feel like if it is Crohn's we can put me on some medicine other than pain relievers and the occasional antibiotic to treat what is going on in my body.
char2482
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Re: New here-my 5 month journey of 6 surgeries for what star

Postby ithurtsbad » 28 Sep 2015, 14:26

Hi Char,
Very sorry the hear your story. This is a VERY long long and painful story.

Please update your condition when you can.

Good luck and as hard as it is, try and be optimistic.
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Re: New here-my 5 month journey of 6 surgeries for what star

Postby char2482 » 29 Sep 2015, 03:10

So my 6th surgery ended up being a little bit more involved than the Drs has anticipated. My simple fistula ended up being a complex one because it had quite a few branches. So now the Drs are thinking I have Crohn's when I've felt like I have since the very beginning of this long journey back in April with my abscess. I have to go to the dr once a week for at least a month (which is a two hour round trip drive) and then have a colonoscopy, biopsy and blood work done to see if I do in fact have Crohn's. After the first week of having my fistulotomy I'm finally feeling better with a lit of relief pressure wise because they were finally able to drain the entire internal abscess. It was a palpable mass about the size of a golf ball, maybe a little bigger. The only time I really experience pain anymore is after a BM. I'll take that over the previous pain I've been feeling for five months any day! I'm feeling like there is a little light at the end of the tunnel now.
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Re: New here-my 5 month journey of 6 surgeries for what star

Postby ithurtsbad » 29 Sep 2015, 05:05

Hi Char,

I'm happy for you. Certainly is an improvement. I hope the diagnosis isn't as bad as you think and it's a curable condition.

I wish you all the best of health.
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