Tail Bone Infection, Fistula, Internal abscess, Setons..... and this was just getting easy....

[DaveNotRoach]

Okay, This is my first post so I'll start with where I'm at right now, maybe a history lesson will come later....

I was just told by my colorectal surgeon that he's never seen this, and that I need to see a specialist who deals with Crohn's and has more experience. About 6 months ago, I went for an MRI because I had tail bone pain and they found an infection in the bone that "looked like it's been there for a VERY long time", a fistula, and an abscess.

Went in for a procedure to take care of all of that, and apparently the abscess was A LOT bigger than they previously thought, so I woke up with a seton (drain) sticking out of my butt. Ah, maxi pads it is! :banana: The game plan was to drain the abscess and then go back in. Okay, let's go!

So fast forward to about two weeks ago. I go for a follow up MRI and the abscess didn't get any smaller. Now this would make sense if it wasn't for all the puss that has been draining out of my ass! :ybiggrin::ybiggrin: So what's the plan now?? Yeah, before the MRI the doctor said it would either be a good procedure or a bad one. The answer..... Worse then the bad one. Doc said it was over his head and I have to go see a specialist that has more experience.

So here I am, with this drain in my ass, this infection that has been there for 10 yrs, fevers every 3 months for about that long, a 1 1/2 year old crohns diagnosis, and another 5 days to wait for my appointment with the specialist.

Apparently the infection is not just in the Coccyx Bone but in the Sacrum too which is makes this more complicated. I have no idea what to expect, and searching on the web comes out empty.

On another note... Originally what lead to my diagnosis was about 8 years of getting "food poisoning" twice a year and finally about 6 months of stomach pain that landed me in the hospital. After a few tests that came up empty, they made me swallow a pill cam and confirmed crohns in the ileum.

The only drug they put me on was Pentasa which at first didn't help, but I then, after being scared of all the other drugs I read about came up with my own cocktail that has had me symptom free and eating just about everything for over 1 year.

Every Day I take:
Pentasa 4,000 mg
Men's Multi w/ Fish Oil
Zinc 50mg
D3 5,000 i.u.
Probiotics (garden of life)
Turmeric & Bromelain 1,350 mg (natural factors)
Flax Seed Oil 3,000 mg
Digestive Enzymes w/every meal
B12 1,500 mcg
Calcium & Magnesium
Boswellia Extract 750 mg
Aloe Vera Gels 225mg

 

[lizbeth]

Hi there, wow what a time you've had!! It's pretty overwhelming what this disease can do, I'm recently diagnosed with Crohns and also have T1 diabetes and find the 2 diseases clash horribly. (plus osteoarthritis in my lumbar spine) It's fantastic that you have been able to find a meds and supplement regime that works for you. I do think it's important to eat healthily, which I did before Crohns appeared, but now it's not so easy, my diet is 'work in progress' at the minute

I really hope that you get somewhere with your specialist appt, will keep my fingers crossed for you. Good luck and take care. Please come back and let us know how you get on.

 

[Angrybird]

Hello and welcome to the forum.

I am sorry to hear you are having such a nasty time of things Just to double check the only med you are on is the Pentesa? I have not had experience with abscesses myself but from what I have seen here stronger meds than this are required to help combat these. Have the docs even tried antibiotics at all? I would normally see the abscess as an indicator that your crohn's is still active, have you had confirmation from your doc that things are settled in this area?

AB
xx

 

[David]

Hi Dave and welcome to the community.

I'm not too surprised your supplements had you virtually symptom free. That's quite a good list. You've certainly been doing your research.

Dave, how far are you from Penn State and would you be willing to travel there to see one of the best Crohn's surgeons there is?

 

[lizbeth]

Hey DaveNotRoach,

How's it going? Was just wondering how your appointment went on the 15th, did you get anywhere with it. Would love to know how you got on.

 

[DaveNotRoach]

@David...

I live in NY, but have a sister in Pennsylvania not too far from Penn State...

Do you have any more info on the Surgeon?? I am still going thru all of this... if anything it has gotten a bit worse.

 

[David]

Dave, this is the guy: http://www.crohnsforum.com/showthread.php?t=50495

 

[smallfry]

Just want to send my well wishes. Abscess and fistula are just terrible!!!! I would agree that you need to see a surgeon that deals with Crohn's and maybe worth it to make the travel for a good one since fistula and abscess take a bit more care to deal with I'd say, from my experiences. The only thing that has helped my abscessing is the anitbiotic meropenem, as far as I know is IV only. I have been on the meropenem since Nov. 2012 with a 2week break and a month break, I just seem to re-abscess. I found flagyl and cipro did not help me but may help you and should probably be tried first, are you on any anitbiotics at all? Remicade did help my fistula in the past but I built antibodies, and Humira is doing ok but for me not as good as Remicade... but we are all different.

Really hope you find something that helps soon!!!!!

 

[Jeannie]

Hi Dave

I am from South Africa. I am going through the same as you. I was diagnosed with Crohns this year. The dr removed my tailbone and most of my sacrum, was rotting away.

And of course I have to wear a plaster, because everything comes out. I was on a draining machine for 3 months. I went for a colostomy so that the colon can rest and the draining and pain is much beter. I thought I was the only one with this problem.

Hope you get beter, I am still stuggling with sitting and everything

Kind Regards
Jeannie Smit