One Month = BAD NEWS.

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WhatDoIDoNow
Regular Member


Date Joined Oct 2009
Total Posts : 22
   Posted 11/30/2009 10:24 PM (GMT -7)   
I am horrified. I cannot describe the distress I am in. I never thought it could be so bad.
 
It has been one month today since my fistulotomy... and just a few days ago I found out that what I thought all along, was infact true. He didnt do it right.
 
The fistula tract is still there, he cut above my anus and the tract goes below my anus.
I dont know what to think, I am in so much pain all over again. I am so depressed that I feel almost suicidal.
 
Isnt a fistulotomy where they take out the tract all together? Why do I still have 3cm or so of tract in me?
 
I am also having SEVERELY smelly, thick, dark yellow and bloody discharge.
 
What do I do? I am so scared.
 
Could there be anymore complications while waiting to see a new surgeon?
 
Has anyone had 2 or 3 fistulotomy's done with no problems with incontinence?
 
Please help me, I am so upset and I cant stop crying. sad
 
P.S. I have not been diagnosed with any disease, I am seeing a GI Specialist asap.
 
 

WhatDoIDoNow
Regular Member


Date Joined Oct 2009
Total Posts : 22
   Posted 11/30/2009 10:25 PM (GMT -7)   
Also, will I ever get back to my normal self? With no pain... and have interest in what I used to love doing? Is there an end to this hell ride?

Aislin
Regular Member


Date Joined Feb 2004
Total Posts : 53
   Posted 12/1/2009 4:41 AM (GMT -7)   
I cannot answer your questions, but I just want to say hang in there. I know someone on here will be able to reply to you with some information. You've got to have some better days coming :)
Female, mid-20's, lives in Australia
 
Symptoms since 99', Dx 2003, Right Hemicolectomy 2004, Trying to find the magic combination to manage this silly disease :)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/1/2009 8:28 AM (GMT -7)   
I have not experienced fistula's, but many of our members have and I am sure someone will be along soon.

To answer your second question, yes better days will be ahead. You just have to be a little patient right now until they find the right treatment for you.

Hang in there sweetie.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 12/1/2009 9:16 AM (GMT -7)   
Wish i had an answer for you but all i can say is I'm sorry your in such pain and stress and hope you get to see the right doc real soon. Hang on until then. Best advise I can give is dont cross the bridge until you come to it. We make our selves worse when we think of all that can go wrong. What if,, is a hard thing to deal with.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


WhatDoIDoNow
Regular Member


Date Joined Oct 2009
Total Posts : 22
   Posted 12/1/2009 10:28 AM (GMT -7)   
Thank you all so much for your support. I feel better today but it always gets worse around the end of the day.

EruditePaul
Regular Member


Date Joined Jan 2006
Total Posts : 266
   Posted 12/1/2009 1:35 PM (GMT -7)   

I do not know exactly what fistulotomy is.  But here is a link to a related topic:

http://www.healingwell.com/community/default.aspx?f=17&m=976485

Hope it helps a bit.  Take care.


Diagnosed with CD in 1994;

In 1994 I was treated with Pentasa of no avail.  Have being treated with Chinese herbal medicines for over 10 years.


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 12/1/2009 3:29 PM (GMT -7)   
I can certainly understand how down a person can get from this disease. I too have a fistula with two different tracts. They will not do surgery to remove it because it goes through the sphincter muscles and they say I'd lose control if they cut. So, I've been living with it for years now. None of the meds have healed it.

I think that the fistulotomy should have removed the entire thing, but I've also been told that in the perianal area can be hard to remove. Is it possible that you've formed a new one?

This weekend I ran out of pain meds and was forced to spend a few days remembering how I "really" feel. I cried so hard... Sometimes I think that I'd do so much better with a temp ileostomy. I am just not ready for that yet.

it just seems sometimes like there is no end to the problems with this disease. After yesterday I've decided to start the Zoloft again. (Just quit a few days ago, but this reminded me why I need it.) Have you tried any anxiety meds?

Hang in there... We certainly get more than our fair share of rough days. Remember we call care and understand.
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Started Cimzia first dose 2/10/09. Dx Osteoporosis 10/08 started Forteo 1/27/09


WhatDoIDoNow
Regular Member


Date Joined Oct 2009
Total Posts : 22
   Posted 12/1/2009 3:50 PM (GMT -7)   
Hey, Thanks you guys for the help.

sr5599:

I hope I dont have the same problem as you, and I am very sorry to hear that you are going through such hell.
I am currently on Ativan 1mg 2x daily.

*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted Yesterday 5:54 PM (GMT -7)   

WhatDoIDoNow, welcome to the board.

 

I have been through precisely what you describe. I had a per-anal abscess which went on for over a year before I finally took it upon myself to find a decent surgeon. I am glad you have at least made the first step. Unfortunately, because my condition had been so neglected, my abscess and the underlying fistula were HUGE by the time I was operated on.

 

My fistulotomy recovery was very painful, and the wound it left was huge, I cried and nearly passed out when I saw it! But gradually it seemed to be getting better. Then, about 4 weeks after the fistulotomy, I started having extreme pain again, with walking, sitting, lying down, everything. I was working this whole time too so it made getting on the bus, sitting all day and walking to work excruciatingly painful.

 

I went back to see my surgeon. I was in pain again and it was getting black again underneath the skin and I knew something was up. And then I got the news I was dreading to hear, the abscess was making too much infection for it to heal properly, and the fistulotomy was only partly successful. I had to have a  2nd surgery – just when I was thinking ‘it can only get better from here!’. I was devastated. I felt like I was in a hole and I didn’t want to let anyone in. I was absolutely miserable.

 

I had my 2nd surgery, and they inserted a mushroom catheter into the wound. The tube they inserted came out of the hole which was left from the fistulotomy. The mushroom drain is a tube which is stitched in, and at the top of the tube there is this mushroom-shaped thing which keeps the drain in place. It helps facilitate drainage of the remaining sepsis.

 

The mushroom drain is very uncomfortable but thank god it does its job. I had to have it in for about 4 months. But finally it came out. and now I am on the road to recovery. I had to wait 12 weeks for approval for remicade, and it made all the difference in my health. This year has been hell for me, and very painful, and I know just what you are going through. I hope you get to see another surgeon soon to get some answers. The sepsis you have draining sounds like mine was before the fistulotomy, thick, yellow/bloody and bad-smelling. It is because it is infected. Please let us know how you progress and if you get any answers, and I hope this has been somewhat of a help. I know that you can get through this, it is trying but it can be done. I am now feeling 110% better and things are healing nicely, I still have my seton in but it should come out in December.

 

Things will get better, I promise you. Hope you’re feeling a bit better today,

 

P


WhatDoIDoNow
Regular Member


Date Joined Oct 2009
Total Posts : 22
   Posted Yesterday 7:19 PM (GMT -7)   
I am so sorry to hear what you had to go through. I know how you felt, the helplessness and just being plain miserable.

Last night I took it upon myself to go to the hospital ER to have it re-assessed and have an ultrasound done hopefully ending in a referral to a new surgeon.

Well today was my ultrasound appointment and GOOD NEWS (sort of)... I do indeed still have a 4.4cm long fistula tract... but no abscess has reformed! YAY.

Now I just have to wait to see a new surgeon at the end of the month to see what he says is best for this sutuation.

:)

*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted Yesterday 7:45 PM (GMT -7)   
That's great news to hear, I am so glad it's not another awful abscess, from the sounds of the discharge it sounded infected. That's fantastic news! Us Crohnnies heal a lot more slowly than 'normal' people ;) so that would have hindered me a lot too. Please let us know how you go at the surgeon, this place provides great support; I honestly don't know what I would do without it!

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted Today 12:49 PM (GMT -7)   
I'm so sorry you are going thru this. Good luck. God bless. And lots and lots of ((((hugs)))).
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


WhatDoIDoNow
Regular Member


Date Joined Oct 2009
Total Posts : 22
   Posted Today 9:40 PM (GMT -7)   
Thank you so much Phoebe and ChronieToo.

I am getting by, just so hard cause the pain can be so debilitating. I have lost interest in alot that I was interested in before. For example; I need to do so much Christmas shopping (And ALWAYS have LOVED to do so) but once I get into the malls I just shut down. Its sad :(

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted Today 11:00 PM (GMT -7)   
WhatdoIDoNow - it is sad. It's hard to give up all of the stuff you love. That's the way I've been too. It seems like it's changed everything. I used to be an avid skier, hiker, backpacker, etc. Now, nope. No energy, too afraid of accidents, pain... I'm gradually adjusting. You will too. It seems impossible to believe that you will eventually think 'ahh, that again'. Not to say it ever becomes "fine" but it does ease up in agony. I suppose it's our tolerance that changes over time.

Hang in there... And, enjoy Christmas in some new way... Maybe more craft gifts? Don't let it stop you from loving the season!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Started Cimzia first dose 2/10/09. Dx Osteoporosis 10/08 started Forteo 1/27/09


WhatDoIDoNow
Regular Member


Date Joined Oct 2009
Total Posts : 22
   Posted 12/5/2009 11:43 PM (GMT -7)   
Sorry, I dont know if I am mis-understanding you sr5599...
Are you saying I will never get better? Or that this may never heal?
I have yet (hopefully never will be) diagnosed with Crohns.
What about if I get the fistulotomy to remove this whole tract? Will I get back to 100%? Or at least close to 100%?
I am scared :(.

WhatDoIDoNow
Regular Member


Date Joined Oct 2009
Total Posts : 22
   Posted 12/5/2009 11:47 PM (GMT -7)   
Also, I went across the border today to New York to go Christmas shopping... It was sort of painful... not so much the fistula and area... but the chaffing from walking around with the drainage soaked gauze! OUCH! And no matter how much gauze I put in there... IT KEPT GETTING SOAKED!

What is the deal with the watery drainage? I am no w having less of the thick drainage and more of the watery stuff. Still pretty smelly (Yuck) but is that just from the gauze and bandage being on most of the day? Cause I cant smell it unless I stick my nose to it (again... YUCK).
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