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dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 11/23/2007 4:04 PM (GMT -7)   
Some if not allof you know I was in the Hospital again on Nov 1 til the 8th.  I have en enterocutaneous fistula and my doc put me on TPN so all I could take in was clear liquids.  I had a PICC line in my arm that I would then hook myself up to the TPN at bedtime.  I ended up with a severe fever this past Monday the 19th. 
 
Since the fever was 102.4 and I had a severe migraine that would not go away I had to go to the ER and again was admitted.  They had to pull the PICC line since that was the most likely source of the infection. Luckily I wasnt too septic the blood cultures were neg but the picc C & S came back positive and that goes in the arm and 30cm are inserted into you so it goes into your chest.  My doc saw the change in the fistula and at this point nothing short of surgery will fix it.  My skin is so raw on my belly from it draining, I am meeting with the ostomy/wound nurse at his office sometime this week so I can find a way to put an appliance over it rather than having to use gauze...I have tried the appliance thing  but being that the skin isnt flush since it is on the scr they have not worked well for me but maybe this nurse will have some ideas for me.
 
I will have to set up a colonoscopy and a fistulagram (a camera on a scope goes in the hole of the fistula to determine better what part of the intestine is affected).  They know it is the large intestine which basically means my now fistulating Crohn's is now fistulating Crohn's Colitis since it migrated to the lg.  Hopefully when I see the doctor this week he will be able to see when I will be able to have the surgery.  Since I lost the other job when I was in thehospital (yup I was a patient at memorial and I worked for memorial) at least my schedule is wide open to set up the tests I will need before the surgery.
 
Once I am finally better I am planning on getting another kitty since Midnight really misses Nessy as do I but I dont want to get a kitty now and then be gone for however long I will be in the hospital.
 
Thought I would update you all on how I was doing.  Luckily my doctor let me come home yesterday morning so I was home for the holiday.  Nothing would have come sooner had I chosen to stay in the hospital vs coming home
 
Stef
 
ps I typed a whole post then it said I had to log in then it kept saying my log in was wrong so when it finally let me log in I justy copied and pasted an email I sent to a friend explaining the same thing
 
Hope all are having better luck than I

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
 
 
 


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 11/23/2007 5:18 PM (GMT -7)   
Hi Stef, Sorry to here you are not feeling well. I am gald they let you go home for the holiday.
I think it would be nice to get a second kitty. I also love cats. Which hospital do you work at.
teddybear
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 11/23/2007 5:34 PM (GMT -7)   
I was working at pawtucket memorial in RI but since I was hired as temp to hire and I missed 6 days they let me go. I was a receptionist there
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
 
 
 


dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 11/23/2007 5:40 PM (GMT -7)   
***hug****

bunches of them to you, lady. i hope you get some relief real soon! keep us posted and take lotsa care!
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
15mgs prednisone (getting there!), 25mgs 6mp, 4000mg pentasa, vicodin for pain & boat load of other drugs for sleep and anxiety!


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6050
   Posted 11/23/2007 5:59 PM (GMT -7)   
hey stef. been there and it ain't fun. i used ostomy appliances for my fistula for a long time. i suffered with mine for 4 years and no one would fix it. i finally found a surgeon who wasn't afraid. she did a wonderful job and it has been like night and day since. if you never went to my website, the pictures of this operation are on there. as for the hole not being in a flat spot for the wafers, i had the same problem. what i did to help with sealing of the seal was to lay on my back, apply the adhesive adding extra to the indented scar area , especially on the downward side, then stretch the area out as best i could and apply the wafer. this flattened out the deprssion and got a better seal.of course this was complicated by the output of the fistula, erupting at just the wrong time.... try some diaper rash cream on the area around the hole. it will help keep the skin from getting so irritated. also ask the dr for some lidocane ointment to numb the skin. good luck and kep after them to fix it soon. dont suffer as long as i did. its not necessary. randy
randynoguts 



     http://www.geocities.com/randynogutsweb/


tinglebell
Veteran Member


Date Joined Apr 2007
Total Posts : 531
   Posted 11/23/2007 8:34 PM (GMT -7)   
Sorry to hear of all these complications. Good advice from Randy though. There is an older type ointment called boroleum which is a skin protectant/analgesic. My 90 yr old neighbor wanted some, and we had to order it through walgreens. It cost $4.00 a tube. Says on the box that it treats and prevents diaper rash, among other things, so I got one for myself also. Good luck with the scheduling of your surgery quickly.
DIANNE
Diagnosed at age 19 with CD.
3 small bowel resections, 1 for perforation, 2 for strictures 
 


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 11/23/2007 8:46 PM (GMT -7)   
I tried desatin and it didnt work. I actually even ended up with a yeast infection on my skin before even while using the desatin. While in the hospital this time that calmaseptic they gaveme is for many things. On the tube it says diaper rash, wound drainage, fistulas (says more too cant remember them tho) just glad I saved my ostomy supplies I will be having the same surgeon that I have had for my 3 other surgeries this year. He said he has seen many other MDs try other methods, suturing it, wound vac on it, skin graft etc but he said those work 50% of the time and most often only for a few months at best when they do work. He wants the scope done to see how much he will need to remove and the fistulagram to see where it is coming from (u think the colnoscopy would show the exit area for the fistula but if he wants it to be more thorough then ill have it). well time for me to hit the hay darn tired woke up today was up for an hour took a nap, got up ate some low residue holiday leftovers, took another nap, awoke had some pudding...layed down and watched TV, a while later had some dinner then came on here and now back to bed...and I am on fentanyl and dilaudid (narcotics typically give me energy u can tell cuz I never ever shut up when on them) but with all this acting up and having no iron in me for the past 3 weeks...they didnt want me taking it by mouth and feared giving it to me IV (only have had it IV at 2 diff hospitals in the state)

wishing you all the best
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
 
 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/23/2007 9:08 PM (GMT -7)   
Steph glad you are eating and just get better. Sorry about having to have another operation but really wanting you to get better. Glad your home again . Thinking of you and Best Wishes with the surgery .lol gail

Sugarmarie
Veteran Member


Date Joined Jul 2003
Total Posts : 1205
   Posted 11/23/2007 10:28 PM (GMT -7)   
((((((((((Steph)))))))))))))
WOW I am so sorry its just terrible what you are going through. I have sent up a prayer for you.
God bless,sm
Confucius say : He who goes to bed with itchy butt wakes up with stinky finger.

Words of wisdom: Never trust a fart

:) Sugarmarie A.K.A. Poopy Pants :)


chico41
Regular Member


Date Joined Jan 2006
Total Posts : 135
   Posted 11/23/2007 11:58 PM (GMT -7)   

Hey ya Randynoguts.  Man i have nothing to complain about after reading your story.  Heck there are times when i wish i had the bag.  That is nothing compared to your bs.    I too would have wished the same as you.  Just let me go to a better place.    I wish you the best of luck.  And i mean that.  You have been threw HELL.  I fell for you and will pray for you. 

 

U.C.02  Large intestine removed

05  Chrohns and Remicade.

06 Hip surgery. 

Philosophy in life is                 Treat people the way you want to be treated. 


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 11/24/2007 9:13 AM (GMT -7)   
I am hoping that it will heal fast and not be like my initial emergency resection where my colon didnt wake up causing me to need Emergency surgery a week later for that temp ostomy and then the abscess and the resident who belongs working in the morgue after screwing up on me mult times even getting feces in my incision 2 times and after me askin her to flush it out with sterile saline since she just dabbed and wiped the poo from the incision where she got it (to me wiping it pushed it further in the wound). then the reversal where they had to do the typical reversal stuff plus he took more of my colon (there was no CD in my GI tract when he reversed it they test and look and all was good). Then the removal of the abscess surgically since it had built a wall around itself so no ABs could penetrate it then since the stoma never healed right feces was seeping under my skin so they had to scrape all of my abdominal walls and remove many adhesions too....I hope this one goes better since basically he is going in to resect again and remove the part that the fistula is in. Hope I dont have to go thru the ostomy and NG tube again especially since my health insurance doesnt cover ostomy supplies since they consider them a disposable product much like gauze
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 11/24/2007 1:14 PM (GMT -7)   
Step,
Roll on 2008, good riddance to this year huh, and to all the problems you've had. How is everyone settling into their new home, I hope its going OK.?
Tess
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