fistula pain etc, this is a long one

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 11/30/2007 4:50 PM (GMT -7)   
HI all,
 
I had my picc line pulled tuesday of last week.  I ended up with picc line sepsis so now my colorectal surgeon has  me just eating a low residue diet since the tpn was doing exactly what the food was except for the amount of drainage from it.  The fistula reared its ugly self on September 16.  At times it looks like it is almost healed hardly putting any drainage out then it begins to look like a small blister is forming at the site then that blister like area grows and to the doc it appears to be mucosa and it looks like a mini stoma.  the output at this point increases then the mucosa goes back in and the fistula looks like a slice in the skin again since it becomes flush against the skin.  It keeps going back and forth between these cycles which my doc has never seen mucosa show then dissapear before.  From the type and viscosity of the drainage he assumes that the fistula is from the large intestine especially since when I was still on Pentasa the beads from it were coming out of the fistula...to remind you it is an enterocutanous fistula right along my scar from my resection surgeries and right under the belly button.  He has never seen a largeintestine fistula show mucosa before nor has he known a lg intestine enterocutanous fistula to not heal on its own.  I have a colonoscopy set up for December 20th I will see my GI on the 21st (he will be doing the scope the day before and they are doing it at the hospital since I am so tolerant of pain meds etc so I am getting general anesthesia).  My colorectal surgeon is going to set up a fistulagram to see where exactly the fistula is coming from and to see if it is distal or proximal and how far in cm as well from the skin surface.  He said he wants that to happen close to when I have the scope I guess he calls the hospital to the radiologist and then they call me to set it up. 
 
Since it isnt closing on its own he knows for a fact that he is going to have to go and do another surgery on me to remove the fistula as well as any other diseased area so it will be more like another resection.  Here is my question when the fistula starts to get smaller and put out less drainage my abdomen pain increases a lot.  the pain is on the left side to the point where the 50mcg/hr Fentanyl patch as well as 4mg Dilaudid every 4 hours for breakthrough pain isnt cutting it.  Before the drainage was so bad that this huge bandage I have on was leaking through so I was changing it a few times a day...I am using an ABD pad, those super fluff gauze, regular gauze, toppper gauze and all of it on my belly makes me look pregnant...not to mention the additional belly swelling.  I find that when the drainage is less the swelling of my belly increases as well and my appetite goes down.  The doctor probed the fistula with the cotton tipped applicator and after he does that blood just runs down my belly from it.
 
I met with the stoma / wound care nurse at his office as well this past week and she tried to help with applying an ostomy appliance over the fistula area to collect the drainage since my skin is so raw that it bleeds when i try cleaning it.  I also have a bad yeast infection on my skin from the feces draining on it.  The 100 mg diflucan was not taking care of the yeast infection so he scripted me the 200mg and the nurse has me using the miconozol powder on the area and putting no sting skin prep over the powder so it will stay on the area.  Needless to say even with building up the area under the fistula since under it is like a valley from the scar line the fistula drainage went right around and ran down my belly and not into the bag.  I tried the ekin seals and the coloplast molding strips then even tried to flatten the area over the moldable stuff with the paste to make it a little more even.  Again no luck it leaked right around it even was using a 1 piece so the flangee area was easier to bend in the center to make it fit in the "valley" area better.  I dont know what I did different that 1 time I got 1 of the hollister wound collection bag to stick and work, I tried that same one again (a few times actually) and no luck.  I figure the calmaseptic over the red area is helping and putting desitin over the other areas where feces gets but isnt red yet works okay for now too but I am dreading how it will act the day of my colonoscopy prep.
 
Any tips for the drainage I will have in mid-late december while prepping for my scope?
Also does anyone else have the same issues with increased pain with decreased drainage of the fistula?  Once it begins to drain more again the pain decreases.
 
thanks
Stef
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 11/30/2007 7:48 PM (GMT -7)   
I don't have any experience with abdominal fistulas, but I do know that when my rectal ones don't drain as much, I will have increased pain until it starts draining again. Personally, I think that it kind of gets backed up, like an abscess of sorts, and then for whatever reason it will start draining again. I have ony had this happen a few times.

I am so sorry for what you are going through. I feel so bad for you! Hang in there.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/1/2007 4:51 AM (GMT -7)   
Hi See your still having some problems with your fistula . I used gauze on mine and sofra- tulle which has an antibotic . I used gauze and changed them when wet. As far as the prep yes I had drainage but it was water. and a person can get the large soft pads for that. the hospital kept me supplied with dressings and tape paper tape that did not irritate me. I would think that the pressure builds up a little when it doesn't drain. They found where mine was by barium enenema. See your going for a fistulagram to find out more about it. Are you still on the Hum.? Mine would heal like you said your was with the blister and all. I never had to take pain meds with mine . Hope your able to get boots or ensure in you .How's your weight holding out? Be keeping an eye out here to see how your doing. Lots of Hugs lol gail

dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 12/1/2007 8:40 AM (GMT -7)   
they have me eating a regular low residue diet. Since all of this all my husband and I do is fight he has threatened to leave me many times in this past week and a half. Now he blames my mom for helping me get that job that they let me go since I was hospitalized soI cannot collect unemployment. He does not understand that in RI they make sure u at least apply to 3 jobs per week and they denied my claim anyway he doesnt understand it and wont let me explain he said I should go back to my college and ask for my money back. He has only gotten unemployment through California and he doesnt believe me when I try to tell him about RI. He only want the 60GB mp3 player that runs for 400 he said if he doesnt get that then dont get him anything. Currently the one he has is 5gb he wont even settle for the 30GB. He is being a total jerk lately.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 


gemini kiwi
Veteran Member


Date Joined Nov 2006
Total Posts : 1136
   Posted 12/1/2007 12:12 PM (GMT -7)   
Step its been such a long haul for you, sorry about your other half being a jerk right now, its obviously a very stressful time all round, I hope you have other family members giving you comfort and support. My BIL in the UK sent this note about 2007, it would sum up your year. Can't send it to HW though as it contains a certain word.! Let me know if you'd like me to send it onto you privately.
Tess.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/1/2007 8:25 PM (GMT -7)   
Hi Sorry things with your husband are not good men can be a pain in the butt at times but hope you are able to get past the problems enough to look after yourself . You have enough right now to worry about. The job thing was not the greatest when they let you go but you need to look after yourself first. The work thing will come later when you are better. Money can be worrisome at times but I guess helth comes first. Had our first winter storm here today so got myself out shovelling for awhile it is pretty though with the snow down. lol gail

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 12/2/2007 8:23 AM (GMT -7)   
Stef,

I'm so sorry to hear that this just keeps going on and on for you, you haven't had a break. I'm sorry your husband isn't dealing well with things either, you guys have both been under a lot of strain. I'll make a suggestion that you two find a counselor (a lot of them will charge on a sliding scale) to help you deal with all the changes you've been through in the last year or so.

Since you probably have to go in for another surgery, and this has been going on for so long, what about disability? Do you have a state program?

I hope this surgery finally resolves your physical problems and then hopefully most of your other problems can be dealt with a little easier.

Good luck, keep us updated on what the surgeon says.
Judy
Crohn's Disease   
 
 
 


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 12/2/2007 4:00 PM (GMT -7)   
I am going to get the info about ssi disability since I exhausted all of my TDI funds while out back in February. My surgeon said most ppl he sees my age just send him the SSI forms and hang out at the beach etc and I really want to work until I no longer can. I know my pcp will fill out the forms with me it would hopefully be a temp thing for me until I am all better and able to hunt for a job again. I need to get on the sites and gather info I just looked at the paperwork online yesterday and to get info I need it has to be a weekday so I will look into it more tomorrow. I am actually thinking about talking to my pcp about getting a handicapped plate too just in case I am in one of those I need a bathroom now or Ill mess myself moments or I have had joint pain so severe I can barely walk. Again I wouldnt hog the spots all the time but only in an emergency basis it may come in handy. The other week while I was on tpn before the picc line sepsis I had the urge for D and was unable to even make it down the 12 stairs in the house to get to the bathroom.

the only program I know about is SSI if you know of any otrher types please let me know even if it is somethingin your state maybe by knowing that name I may be able to find some more info in my state by that.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 12/3/2007 12:18 AM (GMT -7)   
I only know of the SDI (state disability insurance) which everyone in CA pays into, but it's short term. Then the Federal SSI is the same for all the states I believe. If I were going to try for SSI, I would talk to an attorney first thing. I know they get a percentage, but to me it would be worth it to have them do all the paperwork and argue my case correctly.

I hope you can find some help soon, I'm sure there have to be programs out there even if it's just to help you out for the next few months.

Good luck and keep us posted.
Judy
Crohn's Disease   
 
 
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 1:52 AM (GMT -7)
There are a total of 2,735,780 posts in 301,335 threads.
View Active Threads


Who's Online
This forum has 151435 registered members. Please welcome our newest member, Manny222.
157 Guest(s), 5 Registered Member(s) are currently online.  Details
Heatheranne87, Job_the_Phoenix, kimbfowler, Lymiemomster, sharron19


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer