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ANOTHER FISTULA QUESTION....

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Posted 3/3/2010 12:42 PM (GMT 0)
Crohnspt1993- Yes, my hole reopened and started draining 48 hours after stopping the Flagyl. Now, he says surgery and don't let the hole close. As long as it's draining, I'm good. Until surgery, of course.
Posted 3/3/2010 3:48 PM (GMT 0)
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 4x4 in size and composed of 8 thin layers of gauze folded over opon each other. The thickness of the 4x4 is about 1/8th of an inch. I can feel dampness on the outer part of the gauze after it's on for about 2 hours. I have never had so much fluid come out that I could measure it other than at night. If I lay on my back the fluid flows posterior so if I put a measuring cup under my side then I may be able to get fluid into a measuring device. I can't even imagine how much comes out. I guess maybe around 10cc. I'm not sure it's so hard to tell. The good thing is I don't have diarrhea and that lessens my output. Most fistula folks have diarrhea. I'm not sure what is coming out of mine, it's not stool, I feel like it could be bile. But I do drain seeds and things so I know it's semi involved with fecal material. My fistula is connected to the ileum. Where does your stem from?

I am going to my primary care doctor today so I am going to ask him what we should do. Tomorrow I am going to try to get in with my GI doctor. I can send you a picture of my fistula I have been documenting the whole fistula process. My fistula started in Dec 09. Do you have any pics? Thanks for lending a helping hand, I too will do whatever I can to help you as well. It sounds like your going through alot. My email is [email protected] so send me pics if you have any.

Talk to you soon.....
Posted 3/3/2010 3:53 PM (GMT 0)
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 open it up yourself thank God. That doesn't sound fun at all. When are you suppose to have surgery?
Posted 3/3/2010 7:03 PM (GMT 0)
to kmfm,

I actually do not have Crohn's disease. It was initially thought that I had it but I had no signs or symptoms of it, and I know that because I am a medical school graduate. I actually had Catastrophic Antiphospholipid Syndrome (aka Thrombotic Storm) and the reason why I'm in this forum is because I had a surgery SIMILAR to people who have Crohn's. My intestines developed multiple clots in them and infarcted, resulting in severe, unbearable pain, to the point of Code Blue - dropped blood pressure and almost died. As a result of all that, I had a partial enterectomy done on two consecutive days and remained in the hospital for 3 months thereafter, with a fistula formation, and having to learn to walk again. It's been rough, but it hasn't been Crohn's. I'm presently on blood thinners and when my antibody levels increase again, I go back on chemotherapy (Ritoxan).

Take care, friend, and even if I don't have Crohn's, I'm quite confident I know how it feels to have it.
Posted 3/3/2010 7:13 PM (GMT 0)
to CROHNSPT,
I actually don't have pictures of my fistula...I've really just been watching it and from time to time I see a wound care nurse to assess the fistula and how better to treat it. I've never taken any medicine for the fistula (usually somatostatin or octreotide) because my doctor fears that it may cause abdominal cramps/pain that would otherwise mask symptoms of another ischemic attack in my abdomen (mesenteric ischemia). That's great that your fistula isn't draining very much but isn't it cumbersome to change the dressing so frequently? How do you go out and carry about a routine lifestyle? I'm still trying to learn. I'm yet to restart my internal medicine residency. Yesterday I wore pants for the first time: sweat pants. It was a nice change from the long dresses I've been wearing.

My fistula was initially thought to be colonic - so a colocutaneous fistula. But when I relapsed in December, the drainage changed from poop to poop mixed with bile. So that's when the doctors thought that maybe I developed a second fistula in my ileum. At this point, I don't really know....it's either colocutaneous, enterocutaneous, or both. And as far as bile goes, bile looks kinda oily and is usually yellow-ish green in color. and has a very distinct smell that I can't really explain. but you'll know if it's bile because it won't smell like poop!

Keep the faith, CROHNSPT. It's great that your fistula is not draining very much! And I will hope for you that your GI can do something to find a permanent fix ASAP. :o)
Posted 3/4/2010 3:56 AM (GMT 0)
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 onto my shirt and waistband of whatever sweats I am wearing. So to answer your question to a routine lifestyle I'm not exactly carrying on a normal lifestyle or any kind of normal routine at this time. I can't even wear the clothes I like to wear because it either hurts to wear them or I don't want to take the chance of ruining them. My Doctor put me on Flagyl and Ceflex today for the fistula and referred me to a GI specialty surgeon. He chose Levoqen (sp?) and Flagyl but my insurance wouldn't cover the Levoqen. So we will see what happens. After reading your description of bile I definatly think I am draining bile. Being that it's coming from the small intestine that would make sense. Well keep me posted and i'll do the same.

Hang in there....
Posted 3/5/2010 8:13 AM (GMT 0)
going to my surgeon this monday to see whats up with the fistula. He said he doesn't want to intervene surgically at all until this december, which would be 1.5 years after the start of the fistula formation. Not cool. But I guess I understand. I just hope there's something else he can do to make it go away. I have a residency in Internal Medicine I'd like to start in the end of June...I've already been out of practice now for two years :o(
Posted 3/5/2010 8:14 AM (GMT 0)
@ CROHNSPT,

I forgot to ask, what'd your doctor end up saying? You saw your GI today as well, right?
Posted 3/7/2010 12:38 AM (GMT 0)
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 is a strange thing to be excited about but I can guess all of you understand why. That stuff is expensive! Why doesn't your surgeon want to mess with it until Dec? Does he think it may fix itself? Mine is trying so hard to repair itself. Everyday it waxes over and when I pull my bandage off there is an obvious sticky scab like piece of tissue that lays right where the fistula opening lays against the bandage. I know I am graphic but I sort of need to be to get my info across correctly. I will let you know what this GI group of surgeons recommend for me. I am trying to avoid surgery at all costs. It's so painful and I just want to enjoy this summer.
Posted 3/8/2010 4:04 AM (GMT 0)
CROHNSPT,
why did your doc put you on antibiotics? and i totally understand the joy you feel about getting them bandages and fabric tape...i use this pink tape stuff that's waterproof so it protects against bag leaks...it works great...i'm going to the doc's office again tomorrow to see my surgeon and the wound care nurse to see if they can do anything else about the fistula...so i'll pick up more supplies again tomorrow....my surgeon doesn't want to mess with my fistula until december because he's scared to. i had two major surgeries last july that had bottomed me out (i was in the hospital for 3 months) and then after being on methotrexate, i relapsed and was hospitalised again in december. this december episode worsened my fistula and made it bigger / created another fistula like i mentioned earlier....so, because of that, he says that, while he would have otherwise considered surgery this july (one year after my previous surgery), he wants to wait now until december because it would be one year after my relapse in december....he's HOPING he won't have to operate. i'm being tapered off of my TPN right now and the fistula drainage is less than it was before but....who knows.

when you say that you pull your bandage off, does the scap of tissue come off as well? if so, you should talk to your doctor about that...keeping it so dry will just make it worse, then...they have this hydragel stuff that keeps the wound just moist enough to prevent the scab from coming off without delaying the wound healing.

i understand your graphic'ness. it only helps us understand what's going on on your end. i want to enjoy this summer too. i feel your pain.
Posted 3/8/2010 4:05 AM (GMT 0)
CROHNSPT,

are you eating regular food? and has your doctor considered octreotide/somatostatin injections? it's supposed to lessen the secretions of your GIT. I wanted to start that medicine but am already on lovenox injections so i can't handle all the needles, being that i'm already all thinned out with my circulatory system. i need to look more into the treatment of fistulas...that's my homework for tonight...ill let you know what my doc says tomorrow!
Posted 3/9/2010 12:44 AM (GMT 0)

Hi all!  Thought I would add our two cents worth to this discussion.  DH has had Crohn's for 35 years.  Has had several surgeries, complications, yada, yada.  He is prednisone dependent, but luckily is only on 5mg currently.  Has only had one real remission after initial surgery.  It lasted about two years.  In 2004, he had another resection, threw a pulmonary embolism and ended up being hospitalized for seven full weeks.  Long story short, after that surgery he developed two abdominal fistulas.  They can drain up to 900ml of stool a day.  Surgeon will not operate to repair fistulas because he says DH will end up worse off than now.  DH is 5'9" and weighs 130 pounds soaking wet.  We utilize ostomy supplies for his fistulas.  No gauze in the world would work for him!  As if dealing with Crohn's & fistulas wasn't enough, we gith an eternal battle with Medicare.  They are currently refusing to pay for ostomy supplies although they have at times in the past.  DH uses $250-$350 worth of supplies a month because his output is liquid and wear time is 36 hours generally.  DH takes Humira injections, Pentasa, Prednisone, Ranitidine and an assortment of minerals/vitamins.   

Fistulas are just plain nasty!

Posted 3/9/2010 10:15 PM (GMT 0)
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 they were internal fistulas (sm bowel to colon) but we figured it's worth a try and we were right, it's already working. The opening is so much smaller. I keep a photo diary of the opening and WOW what a difference in just one week! Flagyl has worked wonders for me, so has Imuran (in the past). We up'd my dose of Imuran by double and added the Flagyl. I'm hoping NO SURGERY!

about my bandage- it stays very moist, no problems there. Last week when I pulled my gauze off what was on the gauze looked like a mucous plug (very sticky) and it was obviously coming from the fistula opening. I assume if it was exposed to air and dried out it would have become a scab. But due to the moisture it was a mucous wet scab. (gross I know) I should have described that better.

I am not on a special diet, but I do avoid things that bother me. I will ask about those meds if I need to. So far things are looking better. Did you look up fistula treatments? Did you see how the combo of Flagyl and Imuran (azathioprine) work to close them? I wonder if those are meds you could try? I can't believe you have been out for 2 years waiting to complete your rotation! That stinks!!! I can honestly tell you I can relate, the same thing happened to me. I too am in the medical field. Well "was" in the medical field. I am temporarily on hold as you are.

I sure hope you don't have to have surgery. It sounds like your body has been through the ringer. It's good to hear your drainage is less. That is a plus! How many mls are you draining now? You use the heavy duty drainage supplies right? Ostomy bag and tape etc.?

What did your Doctor say at your last appt?

Hang in there xoxo
Posted 3/9/2010 10:24 PM (GMT 0)
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 will get resolution. Even if you have to have your Doctors office call them. I can't believe DH has 900ml of drainage a day. That is intense! Has DH tried surgical dressings with an abdominal binder? Randynoguts told me that is what he used and he had the same amount of drainage as DH if not more. I hear the binders are great! Hang in there, it can only get better right?

PS I agree fistulas are NASTY!
Posted 3/13/2010 2:16 AM (GMT 0)
CROHNSPT1993, thanks for your response. Yes some days DH has an output of 900ml. I appreciate your suggestion of surgical dressings and a binder, but I can't imagine that they would work for him. As his output is feces, the problem of odor alone would be awful. We will continue to deal with Medicare. I just don't think you should have to prove medical necessity time and time again. I am now in the processing of collecting another round of letters from primary care physician, gastro, surgeon and ostomy nurses. Such fun, some are not very cooperative. I wonder if any of them would like to trade places with DH for a couple of days? Hmmm? I might suggest that! LOL!

Keep trucking everyone!
Posted 3/25/2010 3:26 AM (GMT 0)
To Rose481 and Crohnspt...

I'm sorry I haven't been on lately as I've been a bit pooped (literally) and quite in the dumps...my fistula drainage had gone down to about 50 mL/day around the last time that I posted...I was still using an ostomy bag, though, because my fistula is too spontaneous in it's drainage...lo and behold, the drainage, since then, has increased to 800-900 mL/day. It's been a rough couple of weeks and I'm going in for a second opinion this upcoming Tuesday on treating the fistula...they were considering doing octreotide injections initially but i'm also on lovenox (a blood thinner) injections twice a day so having 4 injections in my belly a day is a bit much...plus i'm prone to bleeding...soo....wish me luck on tuesday...this has all been quite frustrating...i can't leave my house anyomre because im draining so much and the ostomy bag keeps leaking. so, that's all...

gnite.
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