Experience with clorpactin?

[mick]

After not improving with my last sessions of DMSO intsills, my urologist recommended that we start using the drug clorpactin. The first two intsills may involve doing another hydrodistention and will have to be done under general anesthesia. Does anyone out there have any experience with receiving this drug? I am looking for positive and negative feedback. I am not sure what to expect in terms of recovery time and if this is worth trying. My urologist does not think that heparin is effective as a treatment for IC.

Also, does anyone know where I can get a medical insigna bracelet regarding having IC treatment. I had a bed experience this week where my bladder could not hold urine in any longer while I waiting for a washroomw on a plane flight. Needless to say things became embarrassing. The stewardess thought if I had a braclet stating about IC that the people ahead of me might have been more accomodating.

Thanks for reading this. Any feedback will be appreciated.

mick

[kadi]

Hi Mick,
I carry a laminated card from the ICA (there's also a business card size one from the ICN store-link to the store at the top of this page) that states that I have IC: a rare bladder disease that makes it impossible to just "hold it". It has helped me greatly on airplanes.

I had a very unpleasant experience with flight attendants refusing to help me and telling me to ask other passengers on a plane to "let" me have an aisle seat. Passenger after passenger turned me down & I was embarrassed to have had to beg, disclose my IC, (and still get nowhere). I was worried not only that I'd inconvenience people with my getting up & down, but that I'd have a wetting accident just trying to squeeze out of a window seat past two other people. Finally a very gracious teenager gave me her aisle seat.

Since then, I always request a seat assignment when I make the reservations and if they won't allow it, I get to the airport early, show the card to the counter attendant, request an aisle seat near the restroom,& ask them to honor my request under the Americans with Disabilities Act. I have not had a problem getting an aisle seat since...


About Chlorpactin, I really recommend reading up on it in the Patient Handbook section of this site (linked at the top of this page). It's not often used anymore, as it is painful & must be administered under anesthesia. It can cause symptom flares for several weeks afterwards.

DMSO helped me some, but not enough, so I am doing the home heparin/marcaine/sodbicarb instills. I feel great most days now. I'd probably get a second opinion before trying the Chlorpactin...

Good luck! Hoping you find relief soon~

[mick]

Kadi,

Thanks ofr getting back to me. I have not had a DMSO treatment for six weeks now and I feel the best since then. I am going to inquire about whether or not I need to go this chlorpactin route becuase some of my discomfort may be from the DMSO treatments these last 10 months.

Right now I feel I can manage my intense pain flares with medication at night if needed. I will look into alternatives to this chlorpactin instillation.

If you have anymore thoughts on this matter, I would love to hear about them. The hardest thing for me to deal with in having this disease is that I feel so isolated at times by not knowing anyone in person that suffers from the effects of this condition. I am so gratefull to have access to this message board to get feedback.

mick