questions about instills

[Maxeeeeene]

I just had my first two instills and I felt great for the four hours I was able to not pee (a world record for me). I was ecstatic. But shortly after peeing my symptoms returned. I understand it takes a while to take effect. These are my questions:

1. How long do these instills last? I mean, can you get sixteen, say, and the wait a year till you have to get more?

2. Re. home instills: is this something you do every day?

3. At what point after having had the instills, can you go back to eating forbidden foods like grapefruit (which never used to bother me and which I'm totally addicted to) and drinking low acid tea, etc?

Thanks.

[waterflow]

For me the pain gets worse too after I pee but I still don't have pee so much afterwards for 2-3 days. I have been having it done once a week for 8 years. You're lucky to have some relief so soon. It took me 8 months once a week before I noticed but then I seem to be the odd ball on that.
Even with the instills chocolate and coffee make it all bad. It is different really with everyone.

[ICNDonna]

How long the instills last can vary with the solution used, as well as the particular patient. I have had several different kinds of instillations and some worked pretty well. Frequency of home instillations varies too. When I did heparin at home, I did two every day for the first month, then gradually decreased to once a week.

Most of us don't go back to our trigger foods and drinks. My IC was diagnosed in 1975 and even though I feel good most of the time, a trigger food will bring on pain.

Donna

[Sarojini]

I agree with Donna; it really depends on what solution you are using as well as on your own body's reaction to the instills. Some say they only get a few hours of relief after each one, and some say that they've gone into remission after a series of them. There is really no way to predict what your response will be...

I used to do my home instills three times per week, but now I just do them when I'm flaring.

Most ICers will always react to their trigger foods, unfortunately, since the disease is chronic. It is possible to have remissions in which it seems you can eat whatever you like, but most ICers I talk to say that even when they are not having IC symptoms, if they eat a trigger, the symptoms will come back.

[lisabar36]

I agree with Donna also. If I try a trigger food, even when doing home instills, it brings on more pain. My IC doc says that instills calms and soothes the bladder, and how long you need them varies from person to person but he said its very important to follow the diet. Its just a diet I have to live with so I don't have pain. I know what foods and drinks cause pain and those are things I need to avoid the rest of my life so I don't cause more harm and pain to my already damaged bladder. :) Lisa

[sphinx]

Everyone is really so different. I started out doing one instill a week for 5 weeks. They only helped a "little", at first only a couple hours after, then the last couple gave me a couple days of relief. I decided to try the home instills so I can do them more often and see how it works. I started them at home daily and it has helped SO much.

Now I skip the occasional day and am still ok. I've never been super-sensitive to diet, but even with good relief using instills, big things like caffeine still kill me!

My uro feels I can do this indefinitely, regulating how often I do instills based on how I am feeling. I have hopes of being able to cut down to 3 times a week or only for flares, but I honestly don't mind doing it daily. Right now I do it every work day, occasionally skip a Saturday if I am just planning on staying home.

[L. Thomas]

I do home instills of lidocaine. heparin, and sodium bicarbonate. It is a pretty standard mixture.
I can do an instill as often as I need one. You may need more than once a day, you may only need them once a month. I have found that my IC is allergy related. During allergy season (outside mold) I need them almost every day. The rest of the year I need one about every 3-4 days. Some people do instills for a while and never need anything else.

My IC is mild, I was diagnosed early and my treatment was immediately effective. BUT remember everyone is different. Instills are not the answer for everyone.

Home instills are more convenient, cheaper and can be used when you need them. My urogynecologist is 90 miles from my home so home instillation was the best choice for me. I used to worry if I was going to need to do instills for the rest of my life. For me it is best to think of IC as being diabetic. I have it and it is not going away but I can treat it. And my treatment is effective.

[GriffsMommy]

As with everything else when it comes to IC rescue instills are so different for each person.
I personally only really see relief while the meds are in. When I void the meds out I usually go back to normal symptoms, maybe some very slight improvement for a short time but that's it.
I don't think I'll ever be able to have my trigger foods and drinks again unless I go into complete remission which I am not expecting at this point for my IC, but that's not to say that others don't.
As for how many you do at home, that's something that usually your dr recommends. I know some people do them just when they are flaring. Because my bladder seems to be so inflammed my dr told me to do them twice a week until further notice. The NP wrote the scripts out for three a week though so I have enough meds for an extra one if I'm having a really bad week.
Unless my IC goes into remission, I personally see me having the meds on hand to do instills for a long time to come if not for the rest of my life.

[lookwho3]

Well I just read most of the posts and I still feel scared.
I am having the first one done at the Urologist in the morning and then have them scheduled once a week for a total of 6 weeks.
I can't seem to find a complete description of whatis done.
I gather you are cathed and then they send the medication through the tube to your bladder.
Does the cath. feel like a pinch when the attach it?
How will I feel when i leave to drive home ( about 45 mins away ).
Won't it hurt the first few times I pee, sting, just from the the procedure?
please respond tonight....I am so worried...
thanks...........
TR

[GriffsMommy]

Each dr is a little different on how they do instills. A lot of dr's use lidocaine to numb your urethra before hand. I would ask about this before they start and if they don't normally do this ask for it and let them know you are very worried about urethral pain afterwards.
Usually from my experience they do the lidocaine to numb your urethra, then the mix the meds and insert the cath. After the cath is in the push the meds into the cath with a syringe and remove the cath and you're done. It really only takes a few minutes.
How you are going to respond is so hard to say. Alot of IC patients find the rescue instills soothing but not all do. I would def voice your concerns to the dr before they do the instill. Good luck :grouphug:

[lookwho3]

thanks as you can see I posted in two places cause I was such a basket case last night!
Thanks for responding.
and for the advise~
TR