Surgery Number 5 in 16 months

[annak87]

Soooo I hadn't really recovered from the last perianal abscess drainage/seton placement surgery at the beginning of February..just a lot of pain, drainage, fatigue, generally just not feeling well since then. This past week though the pain was pretty unbearable and the drainage just stopped. I even told my Mom I was fairly certain it was gathering some grossness in there and forming another abscess. Luckily, I had appointments scheduled today with both my GI and Surgeon. Saw the GI first, he confirmed my fear that I had an abscess built up again. He went and talked to the Surgeon before I went in to see him. Surgeon looked at it and said yep, that's an abscess again. This is my fifth one since November 2009, third since October. I think they're both about as fed up as I am dealing with these so they had already formed a new plan of attack. Surgery tomorrow, leaving the one working seton in, taking the non-working one out, and going in and cleaning out around the fistula and leaving it open. I made my Surgeon promise me no packing and if I woke up with any I would not be happy with him haha I'm so glad to have a good relationship with both of these doctors and can tell them things like this and know that he will do everything he can so I have no packing. He did warn me that this will probably be a more painful recovery than in the past but hoping opening it up more will help it actually heal this time. So fingers crossed. Anyone had this experience in the past?

I'm so glad I'm able to come and just type out everything that's been going on and know you guys can commiserate. I'm very lucky to have a strong support system here at home but no matter how much they listen and try to understand, I really think only people with Crohn's can truly give some insight though.

Really worn out from the appointments today, hurting from 3 people poking around my butt (I go to a teaching hospital so GI had a Resident with him today that took the opportunity to see the 2 setons and poke around the area too), and nervous about tomorrow. Think I'm gonna take some pain medicine and watch the Jersey Shore reunion show for some comedic relief in my day before heading to bed. Have to be at the hospital at 6:15 tomorrow morning..yay? : )

 

[scotishcanadian]

Best of luck on your surgery! You'll do fine. Just by reading your post just now you seem to be a very strong woman. :] Just keep up a bright spirit about everything. I know that's not easy to hear sometimes [Dang, do I know], but it really helps if you do. I'll be praying for you. Please keep us updated!

 

[dgg]

Fistula angst

Hi Annak87. I can relate completely to you. I feel like we have very similar situations. I have a horseshoe fistula which developed in Aug 2009 and which I still deal with. I have also had 5 or 6 procedures, the latest one in Aug 2010. I just found out my surgeon wants to operate again since one of my 3 setons does not seem to be draining anymore. She thinks the skin around the fistula has healed too much, preventing it from draining. I can feel pressure building up there and can push it so that some pus releases through the seton higher up (since it's a horseshoe shape it's all connected). My doctor wants to replace the seton with a larger one and to clean up the area around it. She also said that once the infection is under control she might want to try the plug procedure.

When I had my first fistula in 2008, my doctor tried a seton but it didn't work so she removed it and did a fistulotomy by cuting it open and letting it heal up. It worked well and the recovery wasn't too bad. Sitz baths all helped.

It's reassuring to hear your story since I've never met anyone else who suffers with fistulas the way I do. I don't feel completely alone. I live in NJ and I joined a Crohn's support group but nobody there suffers from fistulas. Please let me know how your surgery goes. When is it exactly? Mine is scheduled for Apr 19th. Good luck!

 

[lamor32twigs]

So sorry you are having continued issues and having to go through this.
Best of luck with your surgery and hoping this is a long term fix for you.

 

[Crohn's 35]

Good luck on your surgery, please post when you can and let us know how you are doing. You are such a brave person, my hats off to you!

 

[tiloah]

I hope this surgery is the last one for quite a while! That is really an ordeal. I'm sorry you have been suffering so and I hope you get some relief finally. They better give you the good drugs. Thoughts are with you.

 

[Cookie]

Sorry to hear you are going through such a rough patch. I do know how you feel. It took me several years to get mine under control. But now things are fine, so don't give up hope. I hope this is your last surgery for a while! Good luck!

BTW, I am a Pittsburgh girl, too. I think fistulas only pick on the toughest people. LOL.

 

[e13 boy]

Hi,

I'm sorry to read about all the trouble you are having.I had 7 operations in 18 months between the age of 19-21 for abscess & fistulas.
In the following order;
Abcsess,Abscess,fistula,Abcsess,Abscess,Abscess,fistula
The fistulas were either side of my Anus,they were removed & 'layed open' to heal.One abscess was drained under local anase'(didn't clear it),the other 4 were drained under general anase'.Had to be cleaned & packed everyday by District nurse.I had to have 2 salt baths everyday as well to aid healing.
A few times they tried drugs to clear them up but that didn't work - hence all the ops.
The Dr's i was under back then gave me no reason as to why i kept getting these problems(no tests either).
8 years later i finally got the diagnosis - Crohn's!

I hope things calm down for you ASAP & you find treatment which works well for you.

It won't help but you have all my sympathy.

Best Wishes

 

[Mark63]

Hi Annak87,

I really sympathise with your situation. January saw surgery number 5 in less than 13 months for me. This brings brought the grand total to 10 so far. I'd like to say things were better, but earlier this week I blew another hole along the line of a a previous fistula. Last time I ended-up being packed for 7 weeks and a seton has been in place for several years. So now it's back on the antibiotics and wait to see the Doctors again. Perianal Crohn's sucks!

I hope all goes well for you tomorrow and you are sitting in comfort soon.

Mark

 

[saidinstouch]

What medications are you on at this point? I'm don't know your story well, but it sounds like you should be on one of the biologics for sure. I also have fistulizing crohns disease and when I am off my biologic (been on Remicade, Humira, Tysabri, and finally Cimzia) I get abscesses very fast. You should talk to your doctor about either starting one of these medications, or if on one at the starting dose, then doubling your dose (either double frequency or twice as much same schedule depending on the medication). These drugs do a great job helping to prevent future abscesses and in a lot of patients can heal them up. If you are already on a high dose of one of these medications and haven't tried the others, then switch to a new one as that helps some people out as well (for me it took getting to Cimzia to find the most relief for all symptoms).

I hope this helps! Also, while I see you like your current doctors, I highly recommend getting into an IBD specialty clinic (i.e. Cleveland clinic, Cedar's sinai, etc.) that is near you. They are at the cutting edge of treatment and know the best course of action for difficult cases of crohns. Unfortunately, fistulizing crohns can be one of the hardest to treat because (at least in my case) the main symptom is the development of abscesses/fistulas and so doctors think it is a milder case than it really is. Getting into a specialty clinic really helped open my eyes to the options available and took a whole look at my case and lifestyle rather than just focusing on the symptoms I presented with.

 

[annak87]

Thanks everyone for the replies! Sorry this is the first I've updated, I've been feeling pretty crappy (I think mostly from flagyl, but the pain is a big factor too). Everything went really well on Friday. The surgeon told my Dad that other than these 2 fistula's everything down there looks really healthy, which is good. When I woke up the first thing I asked the recovery nurse was if there was packing in there. To my relief, she said it was just bandaged up and taped. As usual, I got sick in recovery even after getting some zofran and then another anti-nausea med. I guess it's one of the redhead curses. Apparently along with being hard to get to go under. They were debating doing just twilight sedation or going for general anesthesia but the nurse anesthetist gave me a few shots of pain and anxiety meds while I was waiting in pre-op and after a few minutes of conversation she looked at me and said, are you really not feeling any of that? I mean, it took away the discomfort but I didn't feel groggy. So they decided general anesthesia was the best way to go.

For now I'm on cipro, flagyl, and keeping vicodin in my system. Doing some sitz baths but I think since it's more open this time it isn't as relieving as it has been. Sitting is still out of the question and my hips are starting to get sore from laying on either side all the time. Oh and someone mentioned biologics, I am on Remicade and have been for a little over 3 years. It has helped in clearing up my insides and is veryyy slowly working on the fistula's so we're sticking with it for now. The first abscess I had removed was sadly taken out quickly and without much planning (before crohn's was at all thought of for me) which left a nasty scar. The fistula's come out around the scarring which apparently takes longer to heal, and that has been making it more difficult.

Again, thanks so much for all the well wishes!

 

[dgg]

Happy you're feeling better! If flagyl is bad for you you might want to ask your doctor about a new drug that has come out. I can't recall the name but my surgeon told me about it yesterday and she said it's like flagyl but doesn't have many of the side effects. She said it does often make bodily fluids turn orange. Good luck with the recovery.

 

[kate19]

hey anna, i'm glad your surgery went well!
hopefully, the flagyl side effects will calm down soon. i have a bit of love/hate relationship with flagyl because it's the best antibiotic for me but at the same time makes me feel like crap. i think remembering to take it with food is probably what helps me the most. i hope your recovery continues to go smoothly