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Scared with Fistula Scared with Fistula

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Unread 04-25-2003, 08:44 AM
Scared with Fistula

Dear Sherry,

I will be thinking of you next Thursday. Fistula does sound like the name of a flower : ) Let us know how the repair goes.

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Unread 05-08-2003, 08:00 PM
Scared with Fistula

Dear Karen- I had some tests done at the hospital yesterday. The Dr. cauterized my fistula, so now I have a catheter for the next ten days. He told me this procedure only works less than 50% of the time. I'm over due for some good luck. If this doesn't work then I have to have abdominal surgery to repair the fistula. One step at a time. I return to work tomorrow. Thanks for the support. Any advice on dealing with the cath bag? Casey
Unread 05-08-2003, 09:48 PM
Scared with Fistula

Hi Casey,

I just wanted to send you a BIG and let you know I will be praying for you. I do not have a bladder fistula, but instead a rectal one.

I hope you can get away with not having abdominal surgery to repair it.

You will be in my thought!!
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Unread 05-09-2003, 04:44 AM
Scared with Fistula

Hi Casey

So good to hear from you- I have been wondering how you are!! The cath bag is a major headache for us all, but you will get thru it. I wore it on my left leg on the inside of my knee/calf. that was the most comfortable for me and it made driving easier as it did not get in the way. As for going to work with it, I was to ill so that was not an issue, but when I did go out I wore tight danskin/landsend sweats. don't know if that is possible for you at work. I also made sure when I was out to empty it as often as I could so I did not have any accidents, which can happen if it is to full when you take the cap off. Hope this helps and let me know if ou need anything else.

I will be praying no more surgery for you sweetie. there is an end to the road as long as it seems to be. I had my 8 week checkup and am finally all clear on everything!! It took over 3 months to get there though, so keep the faith!! You are alot stronger than you think and please keep us posted on the boards as to your progress.. praying for you and sending a big warm your way!!
Unread 05-09-2003, 10:39 AM
Scared with Fistula

Hi Casey,

Sorry to hear that you have a fistula. I am a fistula lady too.
Hmmmm care of a cath.

Well, I would recomend that you have an extra leg bag and extra bed bag at all times. Once my leg bag broke and I was stuck at home until hubby could go to hospital and pick a new one up. Although I have walked into the hospital too with the big bag and people would look but I didn't care.

Did they give you any instructions. If not ASK for them. I didn't and I had to figure things out on my own. You need to keep the site as clean as possible so I used wet wipes, gloves and alchohol swabs everytime I emptied. It is okay to see blood in the U-bag (as I was FINALLY TOLD) that the fistula tries to fix itself and then breaks open (cause mine was too big to fix on it's own) and then there would be blood, mucus in the U-bag.

I'm sure HOPE you were told to drink LOTS of water and cranberry juice. You need to keep yourself flushed.

I found that wearing overalls was comfortable especially when I had both caths in (supra & foley) because I'd lift up the bottom of my pant leg and empty that way. Also nothing around my abdomen felt a lot better than trying to wear pants.

You just remember to take care of yourself and LISTEN to your body. YOU will know when you have done too much.

Good luck Casey. I will be thinking of you that the cauterizing worked and you will be within one of the lucky 50 percentile.

Hang in there,
Renee<currently UTI free...first time since this nightmare>
Unread 05-09-2003, 03:02 PM
Scared with Fistula

Dear Renee and Karen,
Thanks for the support and for the info. The nurse gave me directions on how to use the bag just as my friend went to get the car. I was really out of it at the time but I have figured it out. I knew I should be trying to sanitize this stuff somehow. The last thing I need is another UTI. I went to work today. I wore baggy pants. I taped the bag on as well as using the velcro. And I emptied often. It worked! It was just hard to sit and I am ver exhausted. I'll keep you posted. Casey
Unread 05-10-2003, 11:57 AM
Scared with Fistula

Hi Casey,

I have had a cathater for about 5 months & just found out yesterday my insurance will pay for not only the bags but the attend diapers I have been buying. Dr wrote out prescription for 12 bags & 6 boxes of adult diapers to be filled at home health. I go through at least 3 or 4 bags a week because I am very active. However I do not like the leg bags. They are too warm on my leg & give me a rash. I usually wear dresses, nightgowns if at home or shorts (capri pants) when it is warm. I either pin the bag to my clothes or if out put in in a big purse type bag. My neighbors are very used to seeing me do yardwork in my nightgowns with bag attached.

I have the supra cath now which is much better then the urethral especially since Louise told me about neosporin around the supra site. I guess after a while you can get used to anything! Hope you will be dry now!

Unread 05-10-2003, 05:59 PM
Scared with Fistula

Terry- Thank you so much. Six months, Wow! You are a very brave princess. I'm adapting. I went for a massage today. I also went t a museum. I may try some gardening tomorrow. Its only a bag afterall. Keep smiling. Casey
Unread 05-11-2003, 05:55 AM
Scared with Fistula

Wow Casey,

You do all that with a urethral cathater? I couldn't move much at all with the urethral. I had it in for 8 1/2 weeks. Had 2 yeast infections & by the time he removed it my vagina was quite raw. I was a lot more careful with it because I knew the risk for UTI was much greater also. However I manage quite well now with my supra. You are the brave one! I haven't even worked since all this began. Hopefully we are both on the downhill side of this.

Have a great day!
Unread 05-11-2003, 04:50 PM
Scared with Fistula

Hi Casey

Glad you are out and about!! You get used to the bag- and as for the UTI issue- I never had one and had a foley and/or supra for 10.5 weeks. So hopefully you will be infection free too!! Take care sweetie and keep up the good work!!

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