1st Instillation Was A Nightmare

[greengenes3]

I was just recently diagnosed with IC during a routine cystoscope while having my bladder slinged up. The question is whether all the leaking was from my loose bladder or bladder spasms from the IC. Before the surgery I had leakage, urgency, and some frequency. I thought I was getting multiple bladder infections from the leakage. The surgery flared up the IC big time. Originally I was told all I would need is the IC diet but since I developed worsening urgency, frequency, and now pain they decided on the Instillations. I went Monday for my first instillation. The doctor made it sound like it was no big deal and by the 3rd instillation I be a new woman. She was very wrong. I got the Heparin/SoluMedrol instillation. No Lidocaine was used. I did have a peds cath with lots of jelly but I almost passed out from the pain. The nurse couldn't understand why I had all this pain with a peds cath. Then the instillation burned. I felt like my bladder was on fire!! Thank goodness that only lasted 5 mins. I held it for close to an hour like I was told. I have extreme pain/cramping, trouble peeing, and peeing every 15-20min with minimal urine. At first I couldn't get off the toilet. I thought I was going to die. I was given an AZO when I left the office. When I called they told me it was normal and take the Urelle I was given 2 days prior. Now they are telling me that it's not normal to have extreme pain, cramping, urgency, and so forth. I must have a UTI. Well we couldn't dip the urine since it was blue so I was sent to the hospital to do a urine culture. I'm now on Bactrim Ds until the culture comes back. I'm supposed to do the instillations 3x a week for 3 weeks. They want to continue with the instillations on Wednesday. I'm thinking I need a break. If I have an UTI won't the instillation make this worse? If I have the same issue (which is stlll present) again how will I know if it's the instillation vs an UTI? All I know I was better before the surgery and the instillation. I have just gone downhill quickly and I'm frustrated and scared. The Urelle finally is helping although I'm dopey and dizzy. I'm now peeing every hour instead of every 20mins. Also I realize I have to eat with the Urelle or I get horrible stomach pain. I got Prelief also. The doctor feels this will help with the symtoms confused. I was wondering if I should get the 2nd instillation tomorrow or wait until this flare subsides? And what is the rush in getting all these instillations done so quickly? And the NP feels the nurse did the instillation wrong also and she won't go far up the urethra with the cath. She coats the bladder and urethra. And she states I shouldn't have emptied my bladder before the procedure (which the nurse told me to do). I'm not eager to go through this again but if it will help down the road I'm game. I appreciate any thoughts or if anyone has gone through something similiar to my story. I just don't know what to believe.

[Landish]

I went Monday for my first instillation. I got the Heparin/SoluMedrol instillation. No Lidocaine was used. I felt like my bladder was on fire!! Thank goodness that only lasted 5 mins. I held it for close to an hour like I was told. I have extreme pain/cramping, trouble peeing, and peeing every 15-20min with minimal urine.

I had my first instillation today with 40.000 Heparin/8.4% Sodium bicarbonate and 1% lidocaine. I didn’t feel burn in the first moment and the catheter that the Dr. used was very small and I didn’t feel any discomfort.

After about 30 min later I started feeling a lot of itching in my bladder and vaginal area, then it turned into a burn followed with the pain. I tried to pee and I couldn’t, my bladder was in spasm and I had to push a lot to urinate just a few drops of urine. The entire day I was in pain, like you, I felt my bladder was on fire and at night I was unable to urinate and I had to use a catheter.

I don’t have any infection and the catheter didn’t hurt me. Usually when I drink water and urinate I feel relief of my pain but not now, I don't know what to do. Tomorrow I am going to call the doctor because I can't do it again, it's a torture.

Does somebody know if I can replace Sodium bicarbonate with anything else? Just to try another option and won’t give up with Heparin.

[bunnykinb]

I have been doing home instills for over 2 years. They are a mix of 80,000 units of heparin, 80,000 units of 1% lidocaine and 3 units of sodium bicarbonate. While this mix has done nothing for me still having to use the restroom every hour, it certainly has reduced the horrible, horrible, horrible burning I was getting for years prior. I do the instills every 2 weeks. Maybe the nurse was rough putting in the catheter. I always use lidocaine jelly, and have to put the catheter in slowly in and out. If I have to reinsert the catheter, I tend to get some burning. I put it in right before bedtime, and can hold it in for about 5 hours sleeping.

When I did the DMSO, I could hardly stand it. I cried when it was time to use the restroom.

Maybe you need the lidocaine mixed in. Unfortunately, with this stupid IC, it is trial and error.

[sailawaygrl]

I no longer use the sodium bicarb because it caused me a lot of burning and made my urethra spasm badly. Also the inability to urinate after the instill might be because your bladder muscles are numb and not working well. Don't try and push to urinate, it isn't good for you.

Greengenes,
I am not familar with your instill recipe so I don't really know what to tell you. I wonder why they didn't use something like lido or marcaine. I am sorry that you are hurting so much, it shouldn't be like that at all. Could you possibly be allergic to the med they used? I hope they do something soon to help you.

Let us know how things go when you go back for the next one.
Sandra

[lalarainbow]

sorry to hear that --- I had 5 instills but each one was two weeks apart, They always told me to pee before they did it.. always used lidocaine. It hurt going in and symptoms increased for a few days after each one--- was suppose to have the 6th one this coming Fri but I am going to get a cysto/hydro done April 6th so they told me to skip the instill.. I had a burch sling done about 8 years ago.
I often feel like I have an infection but usually comes back negative.

You have my sympathy for sure.. it is all very frustrating..

Hope you get some answers--and feel better soon..

[ICNDonna]

My suggestion is to ask that they instill some lidocaine with the other ingredients. That should help with the discomfort.


Donna

[Landish]

I no longer use the sodium bicarb because it caused me a lot of burning and made my urethra spasm badly. Also the inability to urinate after the instill might be because your bladder muscles are numb and not working well. Don't try and push to urinate, it isn't good for you.

Sandra if you no longer use the sodium bicarb what are you using instead? I know that pushing isn't good but the pain is unbelievable and the urine isn't coming out when I try to relax, so I have no option. As I know Heparin is not like DMSO that you have to wait to see the result, with Heparin you have to have relief and for me it was absolutely the opposite.

[greengenes3]

Well I saw the NP today. I'm now running a low grad temp but it was blown off as probably viral although I have no other symptoms except bladder. I was placed on Bactrim Ds but now they switched me to Doxycycline 100 twice day for a month!! I was told that the urethra was inflamed after a second look at the cystscope pictures and that's why I have the discomfort and issues. They wanted to do the 2nd instillation and I said "Hell No". They told me only one person had a reaction to Heparin (and they got a rash) instill so they doubt I'm having trouble with it. So I'm scheduled Friday but I'll see.

Thanks for everyone's input and feedback. They said no lidocaine for me because there is alcohol in it and it would burn the urethra really bad. And they told me they only use 3 cc of Sodium Bicarb so that wouldn't cause any issues. And there isn't anything different they can use than the bicarb. Heparin will cause a rash if I'm allergeric. And the steroid won't do anything either. And they won't empty my bladder next time so I pee more out. They felt the empty bladder didn't help matters. Also I was told to expect some worsening with the first 3 treatments then it won't be bad afterwards. And a different nurse will do the instill with only going up a little with the peds cath so the urethra is coated with the bladder. Also I need to be strict with the diet which I am. Feeling crappy I don't really have an appetite. I've been living off toast and butter and lots of water. I'm scared to death of having the second instill because I feel worse and now the fever. Basically I was told the best and most tolerable solution was the instill although I didn't feel convinced.

I'm learning what works for one doesn't work for everyone. Truly it's trial and error disease. I'm praying God will get me through. I'm sorry Landish that you are going through the same thing but worse. I hope you get answers. If you get the second instill let me know how it goes. I have no trouble peeing. I spasm and out goes the urine. Poise pads for me. I'll let everyone know when I get the second how it goes

Gina

[sailawaygrl]

I am wondering how they are going to not empty your bladder since when you put the cath in any urine will flow out through the cath. Unless they already have the meds attached to the cath and then you will get a lot of air, not a bad thing. I just don't understand how that will work. I have never had a steriod instilled so I am not sure about it burning. As for the sodium bi carb, I only used 3cc and it caused me burning. When you use lidocaine the sodium bi carb helps with absorption into the blaldder wall. You can either use lido without sodium bi carb or marcaine without it too. I find that the lido and sodium caused me burning, but the marcaine I have no problems with. I will look for the article I read that explained how the sodium bicarb aids in absorption. I will still have burning on occasion now, usually if I have to empty my bladder too soon after the instill. It is much better for me if I drink plenty after my instill so when I void the meds they are well diluted.

The way they are explaining the coating the urethra with the bladder??? I am curious about that. Let us know how that works for you. For me personally, it is when the meds hit my urethra too soon and at not diluted that I have the burning and spasming. Like I said though I have never had a steriod.

I hope things get better for you soon. Don't you love it when they tell you nothing should hurt!?!? Like we don't know when somehing is hurting!!

[greengenes3]

2nd Instillation

I had my 2nd instillation on Friday with the NP!! What a difference this experience was!! It was barely uncomfortable since she didn't go all the way up the ureter and the instillation didn't burn this time. I did have to pee in 20 minutes but it didn't hurt or spasm!! I didn't mind peeing every 20 minutes since it didn't hurt. By the end of the day I could go every 2 hours without peeing I slept better too since I wasn't up every 20 minutes!! I'm still taking the Urelle (side effects I'm used to or tolerate now) which helps. The Urine culture said I gave a contaminated specimen so we don't know if I had an infection. I did do a clean catch. I'm to stay on the Doxycycline for the month although I'm nauseated from it. They may straight cath if needed for the culture down the road!! I hope not!! I get the 3rd instillation on Monday!! I made sure the same NP is doing the rest of the them. I'm pleased and hopeful!!

Gina

[sailawaygrl]

Thats great to hear!!!

Sandra