Instills

[IcyAngel22]

I start my instills next week and I'm not looking forward to it. I'm doing a different instill. Instead of heperin they disolve elmiron into the cocktail. I was suppose to do it while taking elmiron to jump start the process but my body can't stand elmiron orally. So my question is Is there anyone else doing this type of instills without taking the elmiron orally? If so is it working? Help. I know it may be confusing but I need to see if it is worth while. I'm 22 years old and I want a treatment that can let me live my life again. I send my sympathy and prayers to those who are going through instills right now. Thanks for listening.

[Kathi]

I've heard that the Elmiron instills are very effective. One of the reasons you may have had taking it orally is that the capsule sometimes bothers people & it is recommended that they dump it into a small amount of water. Gwetting it this way will avoid the capsule:) , so I think it should help a lot. Ask for some lidocaine on the uretha before they do the instill & you should be fine. I never had any problems with instills at all. Let us know how you do.:hi: Kathi

[iwant2help2]

I've only ever had Cystistat which did nothing at all but I do know that is is a very wise idea for anyone with IC to request that a pediatric sized catheter be used. You want that thing as small as you can so as to avoid more pain and stress on the urethra. Best of luck to you!

[kelly McC]

I just started heparin installs and I also could not take elmiron so my uro wants to start elmiron installs in a few weeks.So far so good for me. Best wishes,
Kelly

[Indy]

I had 16 elmiron instills over 8 weeks. They did not help me. I've now had 4 heparin instills over 3 weeks and really feel some improvement. I at the end of my third month taking oral elmiron also.

[Ginny]

You really can not go by how others react to a treatment. We are all different and what works for one will not work for another. I know you don't want to hear that but it is the truth. You have to try it yourself.
I can tell you one thing. I have had both DMSO and Elmiron installations and the Elmiron is a much easier installation. I use to hurt really bad the day of the installation with DMSO but I did not with Elmiron. It actually made it feel better afterwards. For me it did not stay with me. If you can stay on the diet and do these installations I think it could be effective.
Good luck to you.

Ginny

[Dixiefireball]

I will have to agree with the last post here Even tho. I have done great with the heparin and marcaine treatment doesnt mean we all will.:( I so do wish we could all just use one treatment and get well even tho. heparin has helped me I'm not totally well and never will be:( Uless there is a cure:) i'm also haveing to deal with the fact of something called cystitis glandularis now. that could had been caused by the cath. (one idea).
but either way i do wish you all the best with your treatments and pray you find one that helps you.:thumbsup:

[iwant2help2]

Would you mind explaining this affliction if it's not too pesonal?

[blondiecat]

Squamous metaplasia and cystitis glandularis are medical terms for certain noncancerous (benign) changes in the lining of the bladder. These changes don't represent a specific disease. They may be found incidentally on cystoscopy done for some other reason. Cystoscopy is a procedure in which your doctor inserts a long, narrow, lighted tube (cystoscope) through your urethra into your bladder.

A thin layer of protective tissue (transitional epithelium) lines the bladder. Squamous metaplasia refers to a normal process in which transitional cells convert to more skin-like (squamous) cells. Cystitis glandularis describes another type of change in the bladder lining. These changes may occur as the result of many conditions such as:

Chronic irritation such as from a bladder stone or urinary catheter
Chronic urinary tract infection involving the bladder (cystitis)
Hormonal changes in women
Allergies
If a cause can be identified, treatment is directed at the underlying problem. In some cases, the cause of these changes can't be determined.

Taken from this website
http://www.doctorshospital.org/healthreference/reference/588D6E0B-DEAE-497A-8EB03AA206C239DD.htm?category=5299