1 st instill and crying

[ICmomx5g]

I had my first instill today and it made things worse not better. I got the Sodium Bicarbonate/ lidocaine pre-mixed instills with an Elmiron capsule mixed in for good measure. I have got to find something that works. For now my bladder feels like this trial and error is a trial of errors.
I am the first and only IC paitent at the clinic I go to. Everybody seems to be learning how to deal with this from my case. The fact that the meds were ice cold was good, so I held them in as long as possible, but the longer I held them, the more it burned. I felt like I was doing that horrible potassium test all over again. I should have known this would not help because the doctor said that the last time after he put some "rescue cocktail" in after the potassium. I burned for three months after that.
I was really hoping this would work like it does for so many of you. The nurses were hopeful too. I did not really let on that it was hurting in the office (thinking it was just an initial irritation) because I was hoping to see if maybe it would improve, with no such luck. I was jumping up and down( in pain) in the parking lot on the way out and used the ice for the meds on my lap in the car. Now at 4 am I sit here crying trying to make sense of it all.
My impression was that this could help immediately. Is it something to stick it out because it gets worse before it gets better? Anybody recommend trying something else? Where do I go from here?
I have nothing for pain either, just ice. Hurts so bad I can't sleep.

[Berkshire Road]

I'm so sorry you had such a bad experience. I have never had an instill with elmiron, so I don't know what that would feel like. Lidocaine and sodium bicarb are normally very benign, soothing substances, so unless you have an allergy to one or the other, they are not likely to be the cause of the burning. But allergies do happen... Or if you have a latex allergy, the burning reaction could be from the catheter itself. I get heparin with lidocain and sodium bicarb, and the instills feel really good, as soon as they go in.

It's really important that you let the doctor know about this reaction. He might have a theory about it. Meanwhile, I would strongly suggest trying to find a practice where you are NOT the only IC patient, so they'd have some experience with it. Also, you might want to think about asking either the urologist or your primary care dr. for a referral to a pain clinic. You shouldn't have to suffer with this much pain when relief is available. Again, your urologist is not going to give you pain meds if you don't tell him about the pain. It's so important to speak up, even if you aren't sure if your reaction is 'normal.' Just ask, "Is this normal?"

Have you been given any other treatment at all, besides the instillations? Oral medications are appropriate for IC; there is a large variety of different types of meds, different combinations and different dosages. Please start reading the Patient Handbook, available on this site (look for the link at the top of the page), and maybe start trying to follow the dietary guidelines.

Meanwhile, you may get some relief from that burning by drinking a tsp of baking soda disolved in water (yes, it tastes foul), or some of the others may have additional ideas. And, hey, if the ice was soothing for you, stick with it! A lot of people use ice. Whatever works...

Good luck to you, I hope you don't have to suffer like this for long. I do think it's important that you call back the uro's office and explain the reaction you had to this procedure. Since you're all just learning about IC, the more information you share, the better.

I'm thinking about you. Please know that there are a whole lot of people on this site, all dealing with IC and its various complicating factors, and all of us want to help you find a way to get better.

[Janie Miranda]

Oh dear, so sooorry to hear how bad you are feeling after your instill.
Seems like I remember someone on this board saying that they had instilled cold medicine and it had really hurt but when the did it at room temperature it wasn't so bad. Maybe that person will see this post and elaborate. Good luck . . . hope you find some relief soon.

[ICNDonna]

Thirty two years ago I was my uro's first IC patient. He went out of his way to learn about IC and how to treat it and he was my uro until he retired. Even though I have a uro now who knows about IC, I still miss him.

Are you following an IC diet? If not, I think it would be a good idea to begin today. Sometimes diet changes are the most effective treatment.

And please call your doctor's office this morning and let them know how painful you are.

Warm hugs,
Donna

[jen74]

I am sorry you are in so much pain. I also felt more pain after I had my last instill which included heperin, and lidocaine, and saline. I have heard some people say that biocarbonate really can irritate the bladder. Maybe that is what is causing you pain.
Also, it could be that because your bladder is so inflammed as it is, putting anything on it is going to irritate it. If you were kept up all night crying becuase of the pain, I would call your doctor and tell him/her what happened. Maybe having the meds cold did make it worse, I dont know. I do hope you start to feel better soon though.
Jen

[RAS6]

I'm so sorry this caused you so much pain! Installments didn't help me at all, in fact the rescue installments caused horrible incontinence and the DSMO gave me flares. (but my understanding is that isn't the norm)
I had to get away from them completely and try other options. And don't let them tell you there aren't any. That's what my first Uro told me: that Installments, elmiron and Hydro's were all that was available. I loved "The IC Survival Guide", Dr. Moldwin. If your Doctor is learning with you, that might be a great book to check out to get options to share with them. That's how I knew I needed to find a new Doctor. That book gave me so many options that my former Uro wouldn't look into even when I brought them up. These were meds that are very common for IC like antihistamines and tricyclic anti depressents.
Hope you find some relief soon. I know the journey can be rough, but it will get better!

[ICmomx5g]

thanks to all of you for your replies

First, thanks to all of you for your replies! Just knowing that others care and understand is such a blessing I'm crying again...tears of thankfullness.

The doc did not want to put me on anything other than Elmiron and Atarax because I was nursing. He very willing to try the instills since they go directly to my bladder. I seem to be improving at a snail's pace with the Elmiron/Atarax combo orally. Frequency is under control. However, I can't really tell if the diet is really the thing that is helping though. I flare (not as bad in frequency, but in pain) as soon as I veer from it. How can I know that the meds are working and not the diet? One HUGE success was that I could tolerate intercourse without the stabbing/"bumping a bruise" pain that I had for a dozen years!!!!!!!!! This after 6 months of Elmiron/Atarax and IC diet. Now I feel like I am back where I started.

So far I must be so very careful about what I eat. Introducing one thing at a time. Maybe I should try this approach to the meds. One at a time so I can find what works.

My doc comes in from a large city because I live in a more rual area. He treats other IC'ers there, but I don't know how many.
I have a pretty high pain tolerance, but last night I thought I might throw up.
I have moldwin's book and "a taste of the good life" cook book. The problem is I never know untill I try something new.

I noticed some blood from my urethra and a little at the end of my urine stream when I went last night. It is gone now, but my urethra is sore. Could the catheter have been too big? The nurse said it definitely felt "snug" to her.
The Lidocaine gell seems to make the burning worse. Is there an alternitive to it?

[ICmomx5g]

update

update room temp= still failure!

For starters my MD did not believe me at first that the instill caused pain so he had me come in and do the instill all over again. He was convinced that it was the temperature of the instill causing a bladder spasm. So I tried the same regular instill his way at room temp, and no surprise, it BURNED the same as before. He had me wait a while, but I made him remove it and flush my bladder with water.
Inspite of this it still burned and I flared for half a day, not quite as bad as the first time, but not fun.

Initially my doctor was confused because he thought the lidocaine helped me before. I reminded him that I only used it when I was burning anyway so it never occured to me that it may have contributed to the problem and not have actually helped.
I also mistakenly thought it felt better simply because it was cold. This was obviously a very temporary relief.
I guess they assumed that I was not really in pain from the procedure because I have a lot of self control despite the discomfort it caused.
It is beneath my dignity to throw a fit and against my religon to complain. So I guess they are not used to someone like me who can still smile and say something hurts with a calm attitude. All they have to do is look at my chart and see that I have had five very long labors (4/5 were 30+ hours) and one 9lb baby that tore me to my clitoris without pain meds. . . this DOESN'T mean I don't feel pain, I just take it paitently!

[kadi]

Hi ICmom,
A couple of things come to my mind when I read your post.
1. By any chance are you allergic to sulfa? Most sulfa-allergic patients ARE able to tolerate Elmiron (so please everybody, please don't PM me on this), but there is a small subgroup of sulfa-allergic patients who cannot. I am one of those & Elmiron, even orally, made me much worse. If you are allergic to sulfa, you might want to try without the Elmiron.

2. How long are you holding the instillation medicines? I find the instillations very helpful, but if I hold them longer than an hour, I burn horribly & they are worse than nothing. If I hold the solution 45-60 minutes, though I get great relief! (We also dilute the medicines a bit with sterile water).

3. I had burning with Lidocaine, but do not have as much trouble with burning with Marcaine. Several other patients have noted this as well.

4. Some patients do not tolerate latex catheters well. I am not allergic to Latex, but my bladder & urethra do not like latex AT ALL & burn. By switching to latex free catheters, I am much more comfortable.

5. You might try a different size catheter. Some IC patients are most comfortable with pediatric catheters (8 French size). I'm more comfortable with a small adult size (12 French) because it moves around less than the pediatric one.

Hope this gives you some options to discuss with your doctor!

[jen74]

Hi ICmom.
Wow, you are so much like me. I also tend to hold back when I am in pain, as I just dont feel comfortable making a scene. I dont know if this is a good or bad thing though. I also have a pretty high tolerance for pain as well. I had an exploded ectopic pregnancy a few years back and my gyne was very suprised that I was not screaming in pain. Dont get me wrong, I was in severe pain, just that I guess I just dont show it. I am though lately starting to complain more about the pain, as I think you need to do this in order to get help or to get people(doctors) to listen. I find if you are calm and diplomatic about it and lay it all on the table, then the doctors tend to take you more seriously instead from going in there crying about the pain.
I have heard that the marcaine is stronger than the lidocaine. I used marcaine awhile back in my instills, but I also get severe retention from it and could not pee out the stuff and had to have it cathed out. So now I am using heperin,lidocaine and saline and an able to pee this out with no problems. You could just be very sensitive to the caine type meds also. Has your doctor ever suggested adding a steroid to the mix? This might help with the irritation as well as it will take down swelling.
Jen