ANOTHER FISTULA QUESTION....

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!

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.

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.

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.

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)

Ive been on the MTX for about 4 months now, 1mg every monday, injection not oral.

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.

@ 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.

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(

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.

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.

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!

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!!!