ANOTHER FISTULA QUESTION....

New Topic Post Reply Printable Version
41 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

CROHNSPT1993
Regular Member


Date Joined Feb 2010
Total Posts : 42
   Posted 2/11/2010 6:31 PM (GMT -7)   
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 BUY GAUZE AND TAGADERMS AT A CHEAP PRICE? I'VE BEEN BUYING AT CVS AND WALGREEN AND IT'S EXPENSIVE! IT COSTS LIKE $20.00 A WEEK ON SUPPLIES. I'VE BEEN BUYING LARGE BANDAIDS AND FOLDING A LARGE GAUZE INTO A SQUARE AND PUTTING IT UNDERNEATH THE BANDAID. I DON'T KNOW ANY IDEAS? ALSO IT SEEMS LIKE THE DRUG STORES ONLY CARRY GAUZE PADS, NOT GAUZE SPONGES. THE SPONGES ARE THE WOVEN MESH TYPE AND THE PADS ARE NOT VERY GOOD WITH ABSORBING BECAUSE THEY ARE TIGHTLY WOVEN. SO THICK MUCUS SITS ON TOP OF THE PADS RATHER THAN ABSORB INTO IT. PRETTY SOON I'M GOING TO STICK A DARN MAXI PAD ON THIS LIL BUG'R. LOL!
DIAGNOSED WITH CROHN'S DISEASE AT AGE 19. CURRENTLY 33.
I HAVE ILEITIS CROHN'S DISEASE.
MULTIPLE CT GUIDED ABSCESS DRAINS, MAJOR DEBRIDEMENT SURGERY FOR LARGE ABSCESS.
CURRENTLY DEALING WITH A ENTEROCUTANEOUS FISTULA AND PENDING SURGERY (ILEOCECECTOMY).
MULTIPLE BLOOD TRANSFUSIONS. PICC LINE ANTIBIOTICS.
WAITING TO START REMICADE AS U KNOW U HAVE TO BE INFECTION FREE TO START REMICADE. I HAVENT BEEN INFECTION FREE IN YEARS. CURRENTLY ON IMURAN, ZOFRAN, ERTAPENEM (IV ANTIBIOTIC), PAIN MEDS, SERTRALINE, MULTIVITAMIN, AND IRON TABLETS.
 


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 2/11/2010 7:14 PM (GMT -7)   
My GI said it was perfectly fine to swim with my fistula.  You can ask your doctor to write you a script for supplies. I spent upwards of $1,000 on supplies during the year I had my fistula, then my surgeon told me he could write me a script, gee thanks!

Dianogsed with Crohns: At 16 years old. 23 years old now.
Surgeries:3 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings, Fistula Repair
Current Meds: Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: None.
 

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 2/11/2010 7:40 PM (GMT -7)   
I like 4x4 Mirasorb gauze sponges. I order them from MedShopExpress at $5.99 per box. They are soft and absorbant. I am sure there are other sources and other guaze sponges, so google for them.

Could you please use regular font? ALL CAPITOLS are hard to read. Thanks.
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


CROHNSPT1993
Regular Member


Date Joined Feb 2010
Total Posts : 42
   Posted 2/11/2010 9:07 PM (GMT -7)   
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 ostomy bag when in the water or did you swim with it uncovered?

Fallcolors: Do you swim with your fistula?
DIAGNOSED WITH CROHN'S DISEASE AT AGE 19. CURRENTLY 33.
I HAVE ILEITIS CROHN'S DISEASE.
MULTIPLE CT GUIDED ABSCESS DRAINS, MAJOR DEBRIDEMENT SURGERY FOR LARGE ABSCESS.
CURRENTLY DEALING WITH A ENTEROCUTANEOUS FISTULA AND PENDING SURGERY (ILEOCECECTOMY).
MULTIPLE BLOOD TRANSFUSIONS. PICC LINE ANTIBIOTICS.
WAITING TO START REMICADE AS U KNOW U HAVE TO BE INFECTION FREE TO START REMICADE. I HAVENT BEEN INFECTION FREE IN YEARS. CURRENTLY ON IMURAN, ZOFRAN, ERTAPENEM (IV ANTIBIOTIC), PAIN MEDS, SERTRALINE, MULTIVITAMIN, AND IRON TABLETS.
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/12/2010 12:26 AM (GMT -7)   
Thanks for turning off your caps button!

I think you should ask your doctor (esp surgeon) about whether you can swim, as the answer may vary according to how much your fistula is draining, how healed you are inside, and what type of water you're wanting to swim in.

All of these answers vary with time and between individuals, so I think you're better off getting an answer that's specific to your own situation.

All the best to you,

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6050
   Posted 2/12/2010 3:56 AM (GMT -7)   
i used ABD pads for mine as it had a direct connection to my jujenum. it could put out a cup of fluid in seconds. very bad.. we carried extra pads everywhere pockets, purse, all cars, everyones house, and sometimes it still wasnt enough.. i would have went swimming with mine but it just put out too much. i would have been fair to other swimmers to swim in my goop, also i had a central line then as i have for the last 10+ years so swimming is mostly out.
randynoguts 



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


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 2/12/2010 4:47 AM (GMT -7)   
I swam with mine covered, covered like I would have it any other time. I have plastic medical sheet stickers that cover the whole opening and around it.
Dianogsed with Crohns: At 16 years old. 23 years old now.
Surgeries:3 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings, Fistula Repair
Current Meds: Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: None.
 

joy47
Regular Member


Date Joined Feb 2010
Total Posts : 75
   Posted 2/20/2010 7:07 AM (GMT -7)   
Ihave a couple fistulas one on each innerside of butt check. Its been on going for at least 7 years. Flagyl helped a while but then a new primary i got increased the dosage to 500mg more which was 2000mg a day. Inside a week my feet hurt so bad,numbness tingling and shooting pains. I stopped the 500mg extra. It (feet didnt hurt as bad then.) They only real thing that help more than anything was a hot sit bath. At least 20 minutes 3 to 4 times a day. Just not so hot your burn your butt. And If like both fisturlas are really acting up bad i take a nice hot bubble bath for a t least 45 minutes. Now as a women I find the very thin always panty sheilds to be very helpful. Sometimes I may have to use three. but they are only like 5.88 for a 120 of them . They are really thin so you need to check a couple times a day. But you can,t tell you have them on. Also i carry a package of wet wipes.
Now I like to fish and swim and stuff so when my fistula is very active I dont get in the water. Im on Humira and being an immunesupresent durg. I dont want to take the chance, if your know what i mean. So I impervice I fish or walk the beach,ake what have you. And I make my myself go to the gym. Even if its for 30 minutes they very least. I really hope this helps you out money wise or in any other way.

smallgit
Regular Member


Date Joined Feb 2010
Total Posts : 29
   Posted 2/27/2010 10:22 PM (GMT -7)   
Hi everyone I'm new to this forum - I had a resection of a portion of my small intestine done last year x 2. Since July of 09, I've had an enterocutaneous fistula. No luck so far on it healing...am I in the right place? Anyone else with an enterocutaneous fistula? - one that opens onto your abdomen?

also, to MAG102886 - for how long and what dose of methotrexate are you on? I'm asking for two reasons - firstly, I was on methotrexate last year, and secondly because I am a doctor :o)

aronk
Regular Member


Date Joined Jun 2006
Total Posts : 229
   Posted 2/28/2010 8:09 AM (GMT -7)   
Hi smallgit--I'm in the same boat as you. First resection in Jun 09 and basically the same problems you are having. My enterocutaneous fistula heals and then reopens constantly. I'm meeting with my docs Monday to discuss Remicade or surgery to fix the area.

Welcome!
Angela 
Crohn's Disease for 18 years.. 1st Resection June 2009 still having trouble-anastomostic leak and now fistula.  Currently on Flagyl, Entocort, and Imuran trying to get the drainage to stop. 
 


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 2/28/2010 9:26 AM (GMT -7)   
Ive been on the MTX for about 4 months now, 1mg every monday, injection not oral.
Dianogsed with Crohns: At 16 years old. 23 years old now.
Surgeries:3 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings, Fistula Repair
Current Meds: Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: None.
 

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6050
   Posted 2/28/2010 4:43 PM (GMT -7)   
smallgit,, in my experiance, the only fix is a surgical one..
randynoguts 



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


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 2/28/2010 4:47 PM (GMT -7)   
And yea I have to agree with Randy, surgery is probably the best bet to fix it. I was on meds for a year trying to let it heal itself, it didn't. I had surgery, I still have an open hole on my stomach, but no drainage.
Dianogsed with Crohns: At 16 years old. 23 years old now.
Surgeries:3 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings, Fistula Repair
Current Meds: Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: None.
 

smallgit
Regular Member


Date Joined Feb 2010
Total Posts : 29
   Posted 2/28/2010 6:32 PM (GMT -7)   
Thanks everyone for your responses...MAG, are you doing okay on methotrexate? it's uber strong...! I was on it for 6 weeks and had to stop it because it dropped all my blood counts....and my doctor refuses to consider surgery till december of this year :o( because i relapsed this past december... grr.

smallgit
Regular Member


Date Joined Feb 2010
Total Posts : 29
   Posted 2/28/2010 6:53 PM (GMT -7)   
@ MAG, what surgery did they do? and by open hole, what do you mean exactly? do you have a bag over it? I have an ostomy bag over my fistula but it's still draining anywhere from 50-300 mL / day...not fun.

MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 3/1/2010 5:25 PM (GMT -7)   
I havent had any side effects from MTX at all.
 
about my fistula, I had surgery to repair it, by open hole I mean the hole that the drainage was coming out of is still there, however there is no drainage.  I never had a bag, my drainage wasn't that bad when I had the fistula, I just covered it with gauze.
Dianogsed with Crohns: At 16 years old. 23 years old now.
Surgeries:3 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings, Fistula Repair
Current Meds: Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: None.
 

smallgit
Regular Member


Date Joined Feb 2010
Total Posts : 29
   Posted 3/2/2010 10:13 AM (GMT -7)   
I see...I'm wishing I could just cover mine with gauze. I have an ostomy bag over my fistula for the drainage, and it leaks once a week at LEAST if not 3 times a week, so the skin around my fistula is all excoriated. and it's very painful because of it. I wish there was a forum for that. Despite having medical experience, I have no idea what to do. Med school is a waste until you have the experience. :o(
A survivor of CAPS - Catastrophic Antiphospholipid Syndrome with infarcts in one kidney, spleen, liver, and intestines in July '09

Surgeries: cholecystectomy, partial enterectomy x 2 with surgical complication of EC fistula
Meds: Lovenox daily subQ injections, Metoprolol for hi BP
Previous Meds: Ritoxan, Methotrexate, Plasmapheresis, innumerable blood transfusions, and antibiotics galore.


CROHNSPT1993
Regular Member


Date Joined Feb 2010
Total Posts : 42
   Posted 3/2/2010 12:10 PM (GMT -7)   
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? How long have you had it? What is strange is the opening to my fistula went down to the size of a pinhead then I got my picc line pulled and the fistula has been going down hill from there. The IV antibiotic was really helping close it.

Take care,
CROHNSPT1993
Diagnosed with Crohn's Disease at 18, currently 33.
I have ileitis Crohn's Disease. 
I have had multiple CT guided abscess drains, surgical debridement for abscesses, reaccuring psoas abscesses and fistulas.
I have an enterocutaneous fistula and I'm currently waiting to have my second surgery (ileocecectomy)
I've had multiple blood transfusions and picc line antibiotics.
Meds: Imuran, zofran, ertapenem, zoloft.
 


smallgit
Regular Member


Date Joined Feb 2010
Total Posts : 29
   Posted 3/2/2010 12:19 PM (GMT -7)   
I've had my fistula since July 09...I still have my PICC line in and am getting TPN thru it. What antibiotic were you on? The size of my fistula was originally quite large, now it's about the diameter of a pencil. not it's tip, but the pencil itself....I'm draining 50-200 mL per day from it....but at one time was draining up to 2 L from it per day... I feel your pain, CROHNSPT...my skin burns terribly around the fistula because of skin breakdown. changing the ostomy bag is becoming almost daily rather than the previous every 3 days.
A survivor of CAPS - Catastrophic Antiphospholipid Syndrome with infarcts in one kidney, spleen, liver, and intestines in July '09

Surgeries: cholecystectomy, partial enterectomy x 2 with surgical complication of EC fistula
Meds: Lovenox daily subQ injections, Metoprolol for hi BP
Previous Meds: Ritoxan, Methotrexate, Plasmapheresis, innumerable blood transfusions, and antibiotics galore.


CROHNSPT1993
Regular Member


Date Joined Feb 2010
Total Posts : 42
   Posted 3/2/2010 3:47 PM (GMT -7)   
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 that it would close itself. But the doctor saw the fistula when it was pinhead size. Are you on antibiotics? How long are you doing TPN? How long did it take for the size of your fistula opening to shrink? I guess Flagyl is the best antibiotic for fistulas. I am currently not on any antibiotics so I don't know if I should go see another surgeon or what because my surgeon at U of M didn't seem worried about it. But now that it isn't getting better I'm starting to worry about it. The pain is horrible. I don't have a ton of leakage but it is enough to leak through bandages etc. I should look for ostomy supplies. I can't believe you drained over 2 liters a day. That is insane! How did you measure?
Diagnosed with Crohn's Disease at 18, currently 33.
I have ileitis Crohn's Disease. 
I have had multiple CT guided abscess drains, surgical debridement for abscesses, reaccuring psoas abscesses and fistulas.
I have an enterocutaneous fistula and I'm currently waiting to have my second surgery (ileocecectomy)
I've had multiple blood transfusions and picc line antibiotics.
Meds: Imuran, zofran, ertapenem, zoloft.
 


aronk
Regular Member


Date Joined Jun 2006
Total Posts : 229
   Posted 3/2/2010 4:20 PM (GMT -7)   
Just saw my GI and surgeon on Monday and they are recommending surgery to fix my skin fistula. I've had it since August of last year after I had a JP drain in. Now, i just have to figure out when to do it. My GI said to make sure I keep it draining even if I have to stick something in it to reopen it. Fun stuff I tell you.
Angela 
Crohn's Disease for 18 years.. 1st Resection June 2009 still having trouble-anastomostic leak and now fistula.  Currently on Flagyl, Entocort, and Imuran trying to get the drainage to stop. 
 


CROHNSPT1993
Regular Member


Date Joined Feb 2010
Total Posts : 42
   Posted 3/2/2010 4:41 PM (GMT -7)   
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?
Diagnosed with Crohn's Disease at 18, currently 33.
I have ileitis Crohn's Disease. 
I have had multiple CT guided abscess drains, surgical debridement for abscesses, reaccuring psoas abscesses and fistulas.
I have an enterocutaneous fistula and I'm currently waiting to have my second surgery (ileocecectomy)
I've had multiple blood transfusions and picc line antibiotics.
Meds: Imuran, zofran, ertapenem, zoloft.
 


smallgit
Regular Member


Date Joined Feb 2010
Total Posts : 29
   Posted 3/3/2010 12:54 AM (GMT -7)   
CROHNSPT,

I'm not presently on any antibiotics but I've been on TPN since July 09. I originally had two picc lines in but that was because at the time of my surgeries in July, I had a whole bunch of post-op complications and infections. So I was on multiple antibiotics, including meropenem (which is the same category of antibiotics as your ertepenem). I was also on Flagyl for a while. It protects our GI mucosa / treats the GI infections against anaerobic bacteria, typically seen in abcesses.

Anyway, my TPN is being tapered off now, finally. So my arms will alas be free of IV lines. I can't believe it's been so long already. As far as the time period for when my fistula shrank, it really varies. In August, when my fistula was officially diagnosed, it couldnt even be localised because I had so many surgical incisions (I had an emergency laparotomy - open surgery where they just opened up my abdomen through a midline incision and took out my guts, literally. not all of em tho!). The initial drainage was bilious because I was NPO and that drainage was about 1500 mL per day. By the time I was discharged in October, the drainage went down to 500 per day and by November, it was down to 50 mL per day. And my fistula was quite small, clearly by the diminished drainage as well. However, I was started on Methotrexate in November and that caused my fistula to increase in size and possibly create a second fistula. I was readmitted in December for neutropenic fever and at THAT time, my drainage was at 1800-2000mL/ day. We assess my drainage at home with measuring cups that we got from the hospital. I wasn't shy in taking things from the hospital once I was discharged.

I understand your pain, CROHNSPT. I get pain too, but now it's mostly burning pain from my skin being excoriated from the drainage. Are you using gauze for your drainage? How frequently are you changing the dressings? I am using ostomy bags that I'm getting from the hospital. I spent so much money on my health insurance last year when I was in the hospital, that, until April of this year, my supplies are all free of cost now. I wish I could help you out, my friend. If you need help with anything in terms of what bags to use or what worked for me, let me know!

but one more thing: i DO NOT HAVE CROHN'S DS. I know this forum is for that, but I was initially diagnosed with Crohn's, only to later end up in a different miserable state. The disease I have has no forums, so this is the closest I can relate to.

Take care!
A survivor of CAPS - Catastrophic Antiphospholipid Syndrome with infarcts in one kidney, spleen, liver, and intestines in July '09

Surgeries: cholecystectomy, partial enterectomy x 2 with surgical complication of EC fistula
Meds: Lovenox daily subQ injections, Metoprolol for hi BP
Previous Meds: Ritoxan, Methotrexate, Plasmapheresis, innumerable blood transfusions, and antibiotics galore.


smallgit
Regular Member


Date Joined Feb 2010
Total Posts : 29
   Posted 3/3/2010 1:02 AM (GMT -7)   
CROHNSPT, I just wrote an extremely long response to your message but it got deleted! So I'll be short now because I am oh so sleepy.

I am being tapered off of my TPN at present but I've had it since July 09 so it'll be nice to finally be free of an IV line. I am not on antibiotics, but was on meropenem when I was in the hospital before, but that was in addition to being on flagyl and a whole bunch of other antibiotics (I had numerous post-op complications and infections). The meropenem is the same category med as your ertepenem, and the flagyl is the antibiotic of choice to treat anaerobic infections in the GIT, usually seen in abscesses.

My fistula had shrunk quite a bit from August 09 to November 09 with drainage decreasing from 1500mL/day to 50mL/day, but then I relapsed in December and my drainage went back up to 1800mL to 2000mL / day. not fun. It was because of the methotrexate that I was given. so we stopped that.

My nurses tell me that fistulas don't get better on their own typically. I'm hoping I'm atypical. bleh. I understand your pain. Literally. How much are you draining from your fistula? Like, how many times do you have to change your dressing? I measure my drainage with a measuring cup that the hospital gave me. If I can help in any way, in terms of what ostomy bag/supplies I use, lemme know! Take care, good luck, and I hope you feel better.

I don't have Crohn's ds, but have issues that are very similar to it and because my disease has no forum, this is the most I can relate to. Thanks everyone!
A survivor of CAPS - Catastrophic Antiphospholipid Syndrome with infarcts in one kidney, spleen, liver, and intestines in July '09

Surgeries: cholecystectomy, partial enterectomy x 2 with surgical complication of EC fistula
Meds: Lovenox daily subQ injections, Metoprolol for hi BP
Previous Meds: Ritoxan, Methotrexate, Plasmapheresis, innumerable blood transfusions, and antibiotics galore.


kmfdm
Regular Member


Date Joined Jun 2008
Total Posts : 78
   Posted 3/3/2010 2:59 AM (GMT -7)   
You know just as well as I do that you have Crohns. When I was in the hospital on tpn for months, evewntually when I got surgury I was also told that I didn't have Crohns. Yes, you do. You need to contact Dr. Frank Anderson in Vancouver and get yourself on Remicade of Humara. It will save you . My fistula is a tiny hole and ever since I've been taking the shots, I have been so much better. Don't give up. Keep in mind also that our disease is a disease that is not regularally discussed...it's a shotting disease. Talk about it, everyone craps and it's amazing how many people have it . Research it. I don't know where you live, regardless be your own doctor. That's what you have to do, research and never give up. My fisula has maintained the same size for years, I keep an eye on it and make sure I eat foods that do not give me diahhrea. Go to your DR and get Remicade!!!
New Topic Post Reply Printable Version
41 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Friday, December 09, 2016 2:55 AM (GMT -7)
There are a total of 2,735,215 posts in 301,284 threads.
View Active Threads


Who's Online
This forum has 151388 registered members. Please welcome our newest member, ebinease.
180 Guest(s), 2 Registered Member(s) are currently online.  Details
scifigal2k, clo2014


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