How long does the Instill relieve the pain?

[sabstory]

I have had 4 now, about once a week, but not all in a row. They have also done the hydro-distention in the middle. The instills seem to help, sometimes through the end of the day, sometimes until part-way through the next day, but never longer than that. Is this typical? Will they start helping for longer? Is it worth it to keep trying this?
I am also taking Elmiron, Phenergan, and wellbutrin. I don't have any other pain relief right now, and the in-between times are awful. I can't do anything without intense horrible pain. I have missed time at work because of it. I am hoping that the instills start helping, or that my urologist will start me on a treatment that helps more. Any advice appreciated.

[ginaaa22]

When I got instill they too never helped for more than a day. Atarax is helping my nocturia/frequency. From my instills I never got pain relief only bladder relief (frequency and urgency) but it was only for that day. I'm not sure how common this is.

[sabstory]

Thanks. I really appreciate the info. Sometimes I feel like I am the only one struggling with this. It is nice to see that I am not alone. I wish no one had to suffer with this, but since we do, I am glad this community is so supportive. I am going to do 2 X a week instills, at least for a bit. Maybe it will help me keep from missing work as much.
I hate being expected to function normally when I am hurting so much and running back and forth to the bathroom. I think I need to be more verbal about it, because I don't think people understand this condition at all. I know I had never even heard of it when the doctor first mentioned it.
I think at this point for me it is just hanging on for a bit and hoping it gets just a bit better, because I hate this so much.

[Linda May]

My cousin has weekly instills and she is doing great. I am doing fine so far I hope they continue to work for me. I wish you the best do not give up hope every icer is different.

[kadi]

Hi there,
Are you on the IC diet? Just asking because my instillations and oral medicines are pretty much useless if I'm not following the diet. My IC started out very severe - voiding 60x a day, unable to wear jeans, exercise, travel, go to the movies or church. Working fulltime was awful and if I'd not found relief soon, I'd have lost my career. Instillations saved my job and my quality of life. I do them twice a day - morning before work and bedtime. I can sometimes do without them, when I have to (when I have diarrhea or my period, I don't do them), but most days I do the two treatments.
I'm very grateful for these instillation treatments.
I hope you get good results from them and that the relief lasts you longer,

[sabstory]

I have not started the IC diet. I know that I probably should but I do have some restrictive diet issues already, and I find it difficult. I can't eat: artificial sweeteners, milk, eggs, beef, artificial strawberry flavor. I also don't eat chicken, but that's more of a dislike. I rely heavily on soy and nuts for protein, and I keep trying to imagine not eating tomatoes and pineapples.
My current problem is the Wellbutrin the doc put me on this past Friday. My heart feels like it is beating out of my chest. I almost feel like I need to go to the ER. I feel like its skipping and gaining beats, my pulse in 103, where it normally sits around 68.
This is no good. I have been dizzy and nauseated, in pain and exhausted. I am so tired.
Thanks for the advice. I am keeping the diet in mind, I may have to ease into it.

[ICNDonna]

Unfortunately, all of the other things you are trying may fail if you don't do the diet. There are some nuts that are problematic, and soy is a problem for many of us.

My suggestion is to print out the food list (the link is in my signature below) and give the diet a try for six to eight weeks. If you're like me, you'll find it's worth the effort.

Warm encouraging hugs,
Donna

[kadi]

I agree with Donna. Diet alone does not manage my IC, but if I do not follow the diet carefully, my bladder becomes so irritated that none of the medicines work, including the instillations.

I have many food allergies as well: soy, fish, shellfish, avocado, peanuts, and my IC is very diet sensitive. It does feel unfair, but I have to put the overall quality of my life over food. Cheating on the diet for me means broken commitments to family and friends, loss of time at work (and sometimes that means loss of income), overall poor health due to lack of sleep & exercise, depression - all caused by the increased IC symptoms. It's just not worth it to me.

I really encourage you to give it a try. I can tell you that if I ate tomatoes or pineapple, I'd be crying by evening - in spite of the fact that I'm on a lot of IC meds and instillations. They just can't override the inflammation those foods cause.

There are lots of things that help the diet feel less restrictive: free online cookbook from this website, Julie Beyer's Confident Choices books, Chef Dan Norton's online recipe subscription service (lots of international recipes and substitutes for favorite foods I can't usually eat now). Check out these resources - over the last few years, they've really improved the quality of the IC patient's diet.

Best,

[kadi]

I also wanted to mention that for me, Wellbutrin was probably the medicine that started my IC. I had stopped my birth control pill, which I think left me vulnerable, and then the one and only day I ever took Wellbutrin, my IC started. Even though I stopped it immediately- the IC didn't go away, but I can't imagine what could have happened if I continued it. If your symptoms began or have increased since you started that medicine, you may want to talk with your doctor about finding another antidepressant.
But, this could also be an individual reaction of mine. There are other IC patients who take Wellbutrin without problems.

[sabstory]

I only started the Wellbutrin after all of this. I only took it for about 5 days, I quit taking it today. My doctor was concerned that my utter exhaustion might be caused by depression. It probably doesn't help the depression issue that this is the third chronic illness that I have been diagnosed with, and I suspect there will be another diagnoses before the year is out. I hate the stigma of being in pain all the time. People look at you like, "Aren't you milking this a bit," or "Weren't you in pain the last time I spoke with you?" I am sure that I am a bit depressed, but I think the depression came with the IC, (I probably had a bit with the IBS diagnosis as well). I am supposed to talk with the doc (PCP) tomorrow about the Wellbutrin, as well as visit the Urologist for another instill, I am going to ask him about some better pain control. I am in pain no matter what I do. I am trying to cut out the bladder no-no's. Thanks again for the support. I am going to keep trying. I don't have the total give-up personality, or I would have already.

[kadi]

Hi there again,
Just wanted to let you know that it takes about 4-6 weeks of completely following the diet (including label reading to avoid citric acid, sorbic acid, vinegar, etc) to see any real results. I didn't think the diet was helping at all until I was on it about 4 weeks, had a half cup of weak tea diluted with milk and my pain level shot from moderate to severe about 20 minutes later. It's necessary to get treatment for pain, but it's also really important to feel your own symptom levels when testing foods - or you could continue inflaming your bladder on a routine basis and never really get better.

Good luck! This is one of the hardest times in having IC, finding out your trigger foods and getting to treatments that work. It does get better.

[sabstory]

I am going to work on diet. My urologist gave me a script for Elavil for pain modulation today. I hope it helps, I haven't been to work in over a week, except I went in on Wed, and ended up having to go home early, I was just too dizzy and in a lot of pain. I work in retail, so there isn't really a good place for me to sit. Goodness, I need a break!

[kadi]

Elavil was the first medicine to help me. I hope you have equally good (or even better results!) It's one of the most effective medicines for IC, some patients (like my mom & a friend with IC) find it's the only one they need

[L. Thomas]

There is nothing normal for ic..
My first treatment for IC was hepain/liodcaine instlls. as needed. I watch for my sypmtoms and that is when I do one. At first I had 3 a week but had to increase to daily until the IC was under control. Now I need 1 instill about every 2-3 weeks.

[sabstory]

I am doing instills twice a week now. The first time and the time before last my I had a difficult time holding it. My bladder leaked, and it didn't really help with the pain those times. The other times I was able to hold it for a while (between 30 minutes and close to 2 hours). I asked the doctor if anything was different about the instills. He said that the solution was the same. This last time when the catheter was put in, quite a bit of urine came out, I had just urinated. I was surprised because I told the doctor months ago that I didn't think I was able to empty my bladder completely. At that time, they used an ultrasound and reassured me that my bladder was getting empty.
Does anyone else have struggles like this? Also, any ideas about why I would have different results for the same procedure?