Randy I'm sorry to hear the terrible news. If anyone is strong enough to handle this disease and over come it....It's you. You are an inspiration to me. When my enterocutaneous fistula surfaced you...
I finally had my ileocecectomy last Wednesday and I was fortunate enough to have it laparoscopically. I had a hard time finding a surgeon that was comfortable enough to attempt this surgery due to my...
Clonehead: Thanks for sharing your story. You were able to have your surgery laproscopically which is nice and I have heard that recovery is shorter for lapro as well. I sure hope they are able to do...
I personally have not had a Remicade infusion, but I am due to start Remicade therapy after my surgery in 11 days. (Can you tell I'm anxious?) I wish I could tell you anything or at least something...
I am sorry to hear that you too suffer from the terrible knee pain us Crohn's people deal with. I have done research on this and it is related to Crohn's disease. Medication also contributes to knee...
kprice19: I am so sorry to hear that you are experiencing a flare up at this time, I hope you get it under control soon....Hang in there. Did you have your ileocecal resection done laproscopically or...
Hello everyone it's been quite a while since I have posted and that is mainly due to the fact that not much has changed since the last few posts. I am still suffering from an enterocutaneous fistula...
Hello Angela, thank you for responding so promptly to my post. I have been searching high and low for a surgeon that I feel comfortable with and one that I feel can do what needs to be done. I have...
Aronk when did you have the surgery and do u feel like any fistulas are trying to return? I feel that if I have surgery I'm going to end up with ten more fistula holes. How was the recovery? Did u...
Hey aronk this is CROHNSPT I was wondering if you are still dealing with the EC fistula? I unfortunately am. I remember back last year sometime you mentioned you have more drainage and more pain...
Smallgit! WOW your EC fistula closed up? That is awesome! Mine does that once in a while, and everytime I get my hopes up it opens up again. What meds are you on? What do you think contributed to the...
Smallgit! I have been wondering how you've been. You dropped off there for a while! So I read that you are still dealing with your EC fistula. Me too. Mine has a pattern of healing and low output for...
[b] this? [color=#008000> ... opened back up full force, tons of leakage, I am bummed out, need to talk to you. :shakehead: [color=#008000>
Dear Rose481, I am so sorry to hear that Medicare won't pay for those supplies. That is horrible and inhumane. Remember the sqweaky wheel gets the grease. Write them over and over and I guarantee you...
Smallgit, Sorry for taking so long to get back with you. I've been lazy. My Doctor put me on Flagyl because the combination of Flagyl and Imuran has worked in closing fistulas for me in the past. Now...
My Doctor put me on 2 antibiotics and reffered me to a group of GI specialists. The girls at the office are awesome, they gave me a box of bandages and 2 boxes of 12 rolls of fabric tape! I know this...
Smallgit, Yes it is very cumbersome changing my bandage everyday up to 4x a day. Not only do I have to change the bandages all the time, I also have to keep an eye on it constantly so it doesn't leak...
HM, The heating pad helps you? That is something I should try. Oddly when I shower the hot water makes my leg swell more but I think it's because I'm standing for a long period of time. Does this...
Aronk, How many milligrams of Flagyl were you on? How long were you on it? What kind of surgery are they going to do on you? What state do you live in? I am in Michigan. So you didn't have to poke it...
Smallbit, Thanks for the awesome post! I change my dressings up to 4 times a day, but some days I only change the dressing once. The guaze pads I use are never drenched. They are johnson and johnson...
Aronk, Is the fistula opening still sealed up? Did you have to reopen it? What type of surgeon did you see? Weren't you on like day 12 of no draining?...
Smallbit, I was on Ertepenem for residual clean up after an abscess debridement surgery. They pulled the picc when the infection was cleared. I was told at that time not to worry about the fistula...
SMALLBIT, My EC fistula opening started as a small hole and is slowly becoming larger because the skin around the opening is breaking down just like yours. What size is the opening of your fistula?...
I get massive swelling all the way down my right leg. All my problems with my CD are on the rt side of the abdomen. Does anyone else experience this? I mean my rt leg is 3X the size of my left and...
Smallgit Welcome! I'll start the welcoming process with a question: How large is your EC fistula opening? Mine is the size of a pencil circumference and now I have a tiny new hole next to that. I too...
Aronk, you and I are in the same situation. I too had problems with abscesses before the fistula tract. I had some fistulization going on from bowel to bowel but that didn't have any syptoms at all....
Hi guys. I have not gone to the ER yet. I figured I would wait and see what happens . I have heard many say they have at one time or another bled from there EC fistula site. Mine does all kinds of...
I am really upset guys. Last night while I was on the computer I had the bandage off my fistula because sometimes it burns and aches when it's covered. Well it was leaking as usual so I always keep...
Sorry about the "caps" guys it's a habit I need to break. Thanks for all the info on supplies. I am going to call my Doctor tomorrow and see about a script for gauze. MAG102886: Did you use a baby...
CAN WE SWIM WITH THESE FISTULA openINGS? (MINE IS ENTEROCUTANEOUS AND LOCATED ON MY RT SIDE BY THE HIP CREST BONE) SO IS THERE A WAY WE CAN GET AWAY WITH IT? ANOTHER IMPORTANT QUESTION...WHERE CAN I...
GYPSYFP......I THINK YOU AND I ARE IN THE SAME BOAT. THIS FISTULA STARTED IN DECEMBER AND I DON'T THINK IT HAS PLANS TO LEAVE ANYTIME SOON. I HAVE THE SAME QUESTION..."WHAT AM I SUPPOSE TO DO, JUST...
PEDIALYTE IS THE BEST WAY TO REPLENISH YOUR ELECTROLYTES. HOPE YOU FEEL BETTER.......
I HAD C-DIFF FOR QUITE A WHILE A FEW YEARS AGO BUT I DONT RECALL THAT CAUSING ME ANY MUSCLE ACHES OR LEG PAIN. BECAUSE I DO HAVE PROBLEMS WITH MY RT LEG DUE TO CROHNS. YOU SAID YOU JUST STOPPED...
I currently have a enterocutaneous fistula. I was wondering if it's normal for the fluid color to change multiple times a day. The fluid doesn't hold any characteristics of stool nor does it smell...
THAT IS INTERESTING. I HAVE HEARD THE BODY GOES INTO REMISSION FOR WOMEN WHEN THEY ARE PREGNANT AS WELL. HAVING YOUR PERIOD IS GIVING YOUR BODY A FALSE SENSE OF PREGNANCY, THEN WHEN IT REALIZES YOUR...
TO MAG DO U THINK THAT VAC WORKS? DID IT WORK FOR YOU? HOW LONG HAVE YOU BEEN DEALING WITH YOUR FISTULA?...
I KNOW SOMEONE THAT HAS THE SAME SITUATION AS U AND SHE JUST LETS IT DO ITS THING. SHE DECIDED WHY MESS WITH SOMETHING THAT TAKES CARE OF ITSELF. SOMETIMES HER PERIANAL FISTULA openS AND DRAINS AND...
DOES THE WOUND VAC HURT? OR UNCOMFORTABLE? IS IT HARD TO HIDE?...
I AM GOING TO ELABORATE A BIT ON MY INTRODUCTION INTO THE FISTULA WORLD. IT STARTED AS A BURNING SENSATION, I MEAN IT BURNED LIKE HELL. I ACTUALLY THOUGHT THE SURGEON HAD SET SOMETHING HOT ON MY SIDE...
HI EVERYONE IM NEW TO THIS WHOLE FORUM THING. SO BARE WITH ME. I HAVE READ ALL RESPONSES TO THIS TOPIC BECAUSE I TOO HAVE A ENTEROCUTANEOUS FISTULA. ITS LOCATED ON THE LOWER RT QUADRANT OF MY...