another fistula

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crohn's pt mom
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 4/23/2009 10:14 AM (GMT -7)   
My daughter has another fistula.  We had a mini vacation last week and between the plane ride and all the walking around she is in terrible pain.
 
Advil doesn't work anymore so she's going to take vicodin again but wants to get off them.  still on cipro can't take flagyl makes her too sick.  She is still draining and it smells really bad - although it didn't before.  Still taking sitz bathes.  When will it get better.   Her Cimzia is being delivered tomorrow for her first dose but her doctor wants to wait a couple of weeks to be sure she doesn't have any other illnesses (she had a stomach bug 2 weeks ago).
 
I'm about to call the dr and try to get them to move up her first injections.  Her sobbing wakes me up in the middle of the night - I can't take it anymore because there is absolutely nothing I can do for her.
 
I don't really understand how Cimzia works - is she supposed to see an improvement in these fistulas and the abscess?  Right now her stomach is okay.  We really have to  get rid of this da__ abscess .

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/23/2009 11:17 AM (GMT -7)   
((((HUGS)))) Sorry to hear your daughter has developed another fistula. I don't have any advice, other than please do not let her use the Advil anymore. NSIADS can really due some damage to our systems. We are only allowed to use Tylenol. But for now definetly have her take her Vicodin and if that isn't cutting it, I would ask for something different. Hope she gets some relief soon.

Hugs
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/23/2009 11:43 AM (GMT -7)   
Sorry about your daughters fistula and I hope the cimzia works for her, I wonder why they're not trying remicade, from what I heard remi can help alot with fistulas...it's not good to be using meds like advil or any other NSAID's products cuz it promotes bleeding in the GI tract for us IBDers, I hope her doc can gie her something strong for a pain med that is safe.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 4/23/2009 12:55 PM (GMT -7)   
If the cipro isn't working for her, what about asking the doctor to try a different antibiotic? I had good luck with Augmentin with a fistula that was never proven to exist (it was very tiny and only drained occasionally), but all my symptoms totally disappeared after a course of Augmentin for a sinus infection. I've also heard of one are two other people who have done well on Augmentin for fistulas.

crohn's pt mom
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 4/23/2009 6:20 PM (GMT -7)   
thanks for the responses.  Since she doesn't have very good insurance and it doesn't cover remicaide - that's what we hoped to get.  She is getting cimzia because they have an assistance plan.
 
I have never heard of augmenten for fistulas, I'll ask her doctor.
 
we know nsaids are supposed to be bad for her, but her dr. said it was okay and she hasn't had any trouble with them.  They really want her off narcotics.
 
I wish they would hurry up and administer the cimzia - it's getting delivered tomorrow  but her appt isn't until 5/11.

PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 4/23/2009 11:17 PM (GMT -7)   
I am so sorry to hear about the pain which your dear daughter is undergoing. I really don't have any answer, but can only pray that the things get fine very soon. I feel the patients with fistulas should not take too spicy or sour food, as it causes the fistula to misbehave. One should not sit on a hard surface for too long, if it is ano-fistula.
Take Care and keep us posted.
45 years Male Attorney
Diagnosed UC October 1989
 
Had two stage J Pouch Surgery Nov 2005; Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
 
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle: Albert Einstein
 
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/23/2009 11:51 PM (GMT -7)   
I sorry she is still having problems! am wondering about the treatment of the abscess, which is the root of the evil here. I seem to remember that has been going on for some time. And that they put in drains. Did they ever really open it up wide and scrape it out?
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


crohn's pt mom
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 4/24/2009 7:36 AM (GMT -7)   
Yes, March 20th they scraped it out.  Which was an extremely painful recovery.  Then she was getting better but thinks the vacation with all the sitting on the plane and walking around has irritated things again.

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/24/2009 9:44 AM (GMT -7)   
I feel for her! It is a long recovery and you get impatient - at least I did several times. I learned the hard way -- again several times, dumb -- that the body has its ways of complaining and punishing you for getting too active too soon.

I am concerned about the smell you mentioned. Obviously it is connected to the the rectum and/or colon so some smell is liely, but if the smell has changed for the worse, it may be infected again. I would go to the doctor soon. So is the wound open or did they sew it shut and install a drain(s)? If it is a drain, they are notorious for allowing bacteria to enter the tube and then they go to town. I am sure there are some situation that need drains, but all of my docotrs have said they don't use them because of unsatisfatory results.

Whether or not she has a drain, you may want to get a second opinion. This has gone on a long time. Praying that she gets quick relief and healing!!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


crohn's pt mom
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 4/24/2009 10:33 AM (GMT -7)   
She has 3 drains in, but they left the hole open to heal from the inside out.  She's still on cipro and beside the tenderness in the drain region and pain in the abscess from time to time she feels good.  Mostly it's the lower drain, right next to the vagina that hurts.  Hopefully, if she rests for a day or two it will get better.  She went right back to work Tuesday full time after that traveling.

SherryAnn
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 4/24/2009 11:23 AM (GMT -7)   
My daughter has had fistulas too but they are located in her abdomen. She still has one that won't heal and her doctor suggested Remicade but she and we do not want her to go on that because we have heard very bad things about it. She is currently on Flagyl and is on a totally vegan diet. We heard about the Reishi mushrooms from someone on this site and we are very interested in trying that. Have you thought of it? I know how much pain your precious daughter is going through from seeing my own daughter go through it. And I feel for you as a parent because I know how much your heart breaks for your daughter... God bless your daughter and you.

crohn's pt mom
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 4/25/2009 12:10 PM (GMT -7)   

her abscess is so out of control we would gladly take remicade if we could. insurance doesn't cover it.  Last October when it was mentioned we said no because  we thought it was overkill.  Now of course I wish we had tried it because it just keeps getting worse.

The pain is just as bad as it was before she had surgery 3/20 and she's afraid they will make her go in again.  I'm trying to talk her into taking leave from work.  Her doctor is too busy to start the cimzia until 5/11 I would like for her to get a second opinion. I'm working on her.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/25/2009 12:32 PM (GMT -7)   
I am wondering if she has a secondary infection, like cellulitus. When I was very sick, my doctor sent me to an infectious disease specialist because they are trained to deal with unusual situations. They are like detectives really, thinking outside the box to piece together clues. Most other specialists are really good at what they do, but when something doesn't fit into their "turf", they often can't help. What an infectious disease disease doc (who are often found in large teaching hospitals) can do is sample the area and find out exactly what bacteria are present. This lets them use the best antibiotics and treatments. Just a suggestion.
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


crohn's pt mom
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 4/25/2009 6:35 PM (GMT -7)   

What is cellutis(sp?)?  I believe when she was in the hospital they tested stuff they got out of the abscess.  Her GI said there was a lot of  different bacteria but not too much of anything. 

They did it so she could start the Cimzia.  Now a month later who knows what she could have.

a different dr. in her surgeons office was just named the "doctor's doctor" by other doctors.  I was thinking of calling  to see if she could see him.  Would that be appropriate?  I'm not really happy with current surgeon.  He is very nice to her but hasn't really done a thing that's helped her.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/25/2009 7:07 PM (GMT -7)   
I would not hesisitate to see another doctor ASAP! Most doctors have their hearts in the right place but some are more skill than others, and they have different training. Is this other doctor a surgon too?? While it certainly can't hurt to see him and find out if the current treatment of the abscess is working, surgeons may not be the best for infections (their expertise is slicing and dicing -- not as much for post-op care and wound care). But ask him for a referral to a doctor who is trained in infections.

Cellulitis is an infection of the skin tissues by various bacteria. As you know the skin isn't just the surface -- it can go very deep. The skin and tissue around the perineum area is often call the "Mon". It is fleshing skin that is thick. I had a tremendous cellulitis all over the Mon and it can be painful. If her skin is red and swollen, then it could be cellulitis. The good news is it can be killed with antibiotics like Levaquin (a favorite for curing cellulitis). I also had to take flagyl because fecal bacteria had also invaded my skin and flagyl is great for that. The bad news is that if cellulitis gets out of control, it can go septic just like abscesses -- not trying to scare you please. Doesn't sound like whatever she has is that bad.

Hope she gets relief soon!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.

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