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Crohn's Disease
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Posted 9/17/2007 3:49 PM (GMT 0)
Hello everyone,

I am sure you have seen my prior posts I put up yesterday regarding the localized abscess that repopped.  Well last night when I changed tha bandage for about the 4th time I noticed it was a darker brown and had the odor of poop.  Whie sitting on the couch earlier in the day it kept getting whiffs of poo and I had not passed gas, and no one else was around at the time...well one of my cats was at 1 point but not the others.  The area that is open is right below my belly button.

Also in the mix when I removed the bandage was what appeared to be pentasa beads (I normally see them in my BMs).  I called the on call surgeon again and he felt it was not something I needed to go to the ER for but definitly see one of the covering docs today.  My doc has the week off.  When I removed the bandage that I had on overnight I saved it in a ziploc baggie to bring with me, also there was what appeared to be a pool of pus so I was able to get 0.3ml of it in a sterile syringe...took the needle off to obtain it then placed it back on.

I am supposed to start my new job monday of next week, I dont want to have to call out.  My doc mentioned an MRI if the c diff results came back negative since just since Feb alone I have had 17 CT scans.  He is worried about too much radiation exposure.  I called the office today and was able to get an appt for 4pm with another Doc in the practice.  What is the typical course of action taken if in fact it is a fistula?  I doubt something perforated since I dont have a fever today and mine yesterday was 100.1 and tylenol took care of that.  I also had my tetanus shot Friday which can cause low grade fevers.  I am taking dilaudid for the pain but it doesnt seem to be doing anything.  Whenever clothing rubs against the area I am in a lot of pain.  It also hurts to move, cough, sneeze, etc

I am so scared I thought after my surgeries I would at least have a cpl years with no problems but that just doesnt seem to be in the cards for me.  I saw my doc last week on Wed and I informed him of some pain I had been having, he felt around my belly and he said it all feels good as in all was soft when he felt around the belly are including the area I was having pain.  That was when he suggested the c diff test, which that to me is on the back burner right now, I want this issue taken care of first then Ill worry about collecting another sample.  That was when he mentioned the MRI as opposed to the CT. 

I read in comments to one of my other posts that an MRI may be better at detecting fistulas than a CT.  Do you have to do any prep for an abdominal MRI?  I have had MRIs in the past but none on my abdomen

Posted 9/17/2007 4:31 PM (GMT 0)
I am sorry that you are having so much trouble I hope the doctors can help you today and give you some awncers. I have never had this happen so I am sorry I can not help you with this one. Good luck at the doctors today and god bless you. Barb
Posted 9/17/2007 4:34 PM (GMT 0)
Hi Steph Sounds like a fistula to me don"t panic over it I had mine for a long time. The Rem. healed it. You will probably need the proper cleaning solution to put on it and keep it banadaged I also used polytopic on the sterile gauze. See what the Dr. says about it my GI was great when it came to that. I am hoping the Hum. is as good as Rem. for the Fistula's and that it will help you. lol gail
Posted 9/17/2007 5:01 PM (GMT 0)
I just dont think mentally I can handle any more surgeries this year. I also worry that I wont be able to eat or drink anything until it goes away. I hope humira does help fistulizing CD. I never had a fistula until Feb, and I didnt know I had it since it went from intestine to intestine. The only way they found it was when they opened me up for my emergency resection. I am using sterile gauze to pack into it until I am told to do otherwise. Once verified that it is a fistua I will call my GI. I was in the process of cutting down on my entocort since I noticed no change with my bowel habits. I wonder if that 1 dose of questran I took may have caused this or sped up the process.
Posted 9/17/2007 5:05 PM (GMT 0)
i'm so sorry to hear about the latest update with the problem you've been having :( keep us posted on how you are doing. you take care!
Posted 9/17/2007 5:54 PM (GMT 0)
Steph maybe you really aren't ready to go back to work. Maybe you should consider SSI or Disability. Things keep popping up on you and it seems as if you can't get better. I would think if you first get on the Humira and see how things go with that and you start feeling better, then maybe look for a new job. Plus how can someone continue to work on meds like Dilaudid. That's pretty heavy duty pain medicine and you say its not touching your pain. Sorry if I sound like a downer, but it seems at this time, you can't win for losing. Your Crohns has a grip on you and doesn't seem to want to let go. Hope this doc today can help you. Good Luck!
Posted 9/17/2007 6:05 PM (GMT 0)
I can function on pain meds since they give me energy rather than making me loopy. I really want this job so I hope all things will work out so that I may start there next week. I was just able to look for this job since I was laid off at my old job. The job is mainly sitting, all medical records are on the PC so no filing is needed. I dont have pain unless I need to cough, sneeze, etc...or if something pushes on the area that is affected. Sitting down I feel okay, but what a smell at times ....I heard gas rubling in my belly before and then smelled it eminating from my belly.
Posted 9/17/2007 6:34 PM (GMT 0)
That gas and smell thing doesn't sound good.  Please keep us posted on what the doc says.  Sorry you keep having all this crap pile up on you.  If its not one thing, its another.  Geesh!!!!! confused
Posted 9/17/2007 8:45 PM (GMT 0)
WOW I am so sorry and sad for you I prayer that things get cleared up quickly and you can start your new job.
gentle hugs,sm
Posted 9/17/2007 11:53 PM (GMT 0)
I just got home a little while ago, my appt was 4 and I didnt get called in til 630....got out of there at 710. He has me placing wet gauze in the hole for now. I need to call my GI tomorrow cuz he may not want to start humira if there is an abscess even tho it is caused by a fistula. I wasnt home to talk to him tho so I have to call in the AM. So I was told to do what I have been doing...
Posted 9/18/2007 12:35 AM (GMT 0)
I have always gotten my remicade before, during, and after my abscesses. I actually got my 3 induction infusions when I had my huge rectal abscess before we figured out that it was an abscess. My nurses never had a problem with it because it was part of the disease. So hopefully you will be able to start your humira.
Posted 9/18/2007 2:16 AM (GMT 0)
I hope to speak with or see my GI to explain it to him now that I have a Dx by my surgoen's assoc...figures mine is on vacation...Maybe he will put me on cipro, flagyl or vanco ...flagyl and vanco treat C diff anyway and maybe by the time my humira gets approved maybe the abscess part of it will have subsided. The doc said I am doing everything right though and it isnt bad at this point he feels the humira will help it. I just dont get it...why do some crohnies go years with no symptoms after surgery and here I am....I want kids...so I need to get better already my hubby is 13 yrs older than I and I want him to be around for everything....and preferably in a good health state....goodness if we are able to have kids I hope they are blessed with his health genes and not mine
Posted 9/18/2007 10:59 AM (GMT 0)
Hi Hope things are going better this morning.I was on the Rem. when I had my Fistula that is why I was on it .It is good that it is draining at least the stuff is coming out which is probably a good thing. It will help get rid of the redness too .I used to get a little red around mine .The Rem. started to work on my first Rem treatment.I know your ready to get things better and I think the Hum. will probably do it for you just a matter of getting the right meds started. Hope you do good at the GI's today and give things some more time to work out .Here for you, I was upset when mine showed up and didn't have anyone to really talk to about it so just wanted you to know your not alone with this and they do heal. lol gail
Posted 9/18/2007 11:19 AM (GMT 0)

gachrons said...
It is good that it is draining at least the stuff is coming out which is probably a good thing.

This is true. I had surgery for intestinal abscess drainage and enterocutaneous fistula (connecting to skin) management a couple of months ago. The surgeon left the stomach open so the fistula could drain keeping waste from leaking around on my insides. It's good if it's draining out of you rather than leaking on the inside where you could an infection or something. I change my bandage about every six hours to prevent skin emaciation and odor and use a skin barrier to protect the skin. We're hoping the fistula will seal off within a few months, if not, Remicade.

Oh, and yes, sometimes I see the Pentasa beads in the drainage. One time, the fistula itself actually farted, audibly. That really caught me off guard as I was out in a public place and didn't know what was going on. Since I've been on Pred it's been draining much less and hopefully is getting better.

Post Edited (Driver37) : 9/18/2007 5:20:57 AM (GMT-6)

Posted 9/19/2007 11:50 PM (GMT 0)
Driver,

Im sure it was very embarassing at the time but the thought of your stomach farting made me laugh. Stef- I hope you get some relief soon!!!
Posted 9/19/2007 11:59 PM (GMT 0)
Mine has farted a few times now and started putting out a little more output. In the AM when I lift the sheets the odor takes my breath away its so bad. I started using skin prep since my skin started breaking down. My c diff came back neg and my humira is at the pharmacy and I am picking it up tomorrow. My GI isnt in the office tomorrow but a nurse should be if not I plan on going Friday
Posted 9/20/2007 12:20 AM (GMT 0)
I'm so sorry for what your going through (hugs)
Posted 9/20/2007 12:29 AM (GMT 0)
I am so sorry steph...hope you feel better soon maybe the humira will help...good luck!!
Posted 9/20/2007 2:47 AM (GMT 0)

dragonfly137927 said...
I started using skin prep since my skin started breaking down.

It's really important to keep the skin from breaking down, from what I was told. If it's draining a lot, you may want to change the bandage 3-4 times a day to clean the skin and put the skin barrier on. For the bandage, Wal-Mart has these bandages called "Surgi-Pad" that are very absorbent. Walgreens has them also but Wmart is cheaper. I usually put a layer or two of gauze and then the surgi-pad over. I recommend using paper tape to keep the tape from tearing your skin. It's a real pain but a regiment I've gotten used to. In the beginning, I was changing the bandage 3-4 times a day.
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