1st instill today...have questions

[Debgail]

:( It was hard...today was the first time I have had an instill other than the one my uro did while I was under during my hydro in Feb. I was in the exam room for over an hr and had to pee sooo bad, but they wouldnt let me go because the Dr. wanted to do a sterile cath to see if there was anymore infection since I am just finishing with a uti.Thank goodness, no more uti!

When they started the instil I was trying to relax...but looking over at that long hard looking cath was getting me scared...I am a child survivor of non medicated dilitations from 5-8 yrs old and I have a hard time with caths to say the least.

But I tried to be brave...and he did use a whole syringe full of lidocaine jelly...I could not have done it without it. It was still painful for me escecially at the bladder neck. My uro did a combo of lidocaine, elmiron (2opened caps) heparin and sodium bicarb. When It was done and the solution was in there I didnt feel too much pain..but when I went to pee it out later I thought I was going to pass out! My urethra instantly started killling and I felt like I had the worst uti yet. My uro didnt give me anything for pain and I luckily found some pyridium plus( which makes me sick) and I took it and about 45 mins later it was better...but I still feel like I had sex 20 times and throb in my urethra.

HERE'S MY QUESTION....will it always be this painful and traumatic to have instills? Seems like so many of you do them without pain and I just feel like a hot poker has been shoved up there. My Dr. wants me to have another one next week or the week after. How fast do they work?? Right now I still have bladder pain and wonder when it is going to kick in(it was 3:30 when I left there).I think it is worth trying again if can give me some relief during the week and pain medication to supplement. What if I hadnt had the pyridium plus I would still be pacing the hallways of my house in tears! My uro who is very smart proceedures about ic.....does not give out pain meds because he doesnt believe in them....sigh....

I just want to be pain free ...whatever works! I am hoping the instills will help me along with the elmiron which hasnt helped yet. (also elavil and axarax are staples)

Sorry to take so long ...I guess I just wanted to tell you what happened and please tell me if you have any advice or experiences to share ok! :kissing:
Debbie

[kadi]

HI Debbie,
I have only had DMSO cocktail instillations, so hopefully someone else will come along to answer you on your particular type of instill.

But, I want to tell you that I also have very bad childhood memories of being strapped or held down & catheterized for various tests & procedures. (I had numerous bouts of UTI & kidney infection as a small child due to kinked ureters which were straightened-had bladder surgery twice- at 18 months & 3 years old. After that no problems til IC onset at age 35).

It was very difficult for me to decide on the instillation treatments as a result of the childhood trauma. I think I tried everything else possible because I so much did not want to be catheterized.

Fortunately the doctor & nurses were very understanding & gave me these suggestions...
1. Use a flexible pediatric catheter (size 8 French)
2. Take pain meds beforehand (Darvocet for me) & have a friend drive
3. Take Pyridium a few hours before the 4:00 instill so it's in the system (Make sure your doctor is ok with this, the dye may interfere with some urine tests).
4. Breathe slowly during insertion of the catheter. One nurse suggested bringing music in a CD player with a very slow beat for the "holding time" for the instill.
5. Plan to do little following the instill. I usually make sure I have a light video ready to go when I get home & make pancakes for dinner. I then spend the evening curled up on the sofa with the kitty.

For me, the DMSO instills were really painful in the beginning, now they are merely uncomfortable. I don't have to take the pre-instill Darvocet now & do drive myself to & from the instills. I usually have an uncomfortable flare for 24-48 hours afterwards, but then I am much better off for the next 5-6 weeks... I went from 24/7 misery to mostly ok with some discomfort. I can work a full day easily 95% of the time, drive up to a couple of hours, wear pants, exercise, travel - none of which I could do before the instills. My "bad days" now are what my "good days" were last year, so it is worth it.

I hope someone can give you more info on the type of instills you are having, but did want to encourage you that you are not alone, that these things can be managed, & that I hope you are on your way to better days soon!

[Kathi]

Kadi has some great suggestions! Ask your GP for pain pills or at least take some over the counter pain pills (Advil, Tylenol) whatever you can take. I always used an ice pack when I got home, alternating between the bladder & the uretha & it seemed to help. Let us know how you're doing. Kathi

[ICNDonna]

It does get easier as time goes on. I agree that Kadi has some good advice.

Donna

[Sarojini]

My first instills of DMSO were pure torture. They didn't end up working, so I switched to the heparin/lidocaine/bicarb ones as a rescue treatment -- anyway, my first ones were always tough, but it gets easier each time you do it. At least, it did for me.

[Haysmom3]

Mine got easier the more I went also. The first one was pretty rough.I thought what am I doing?!! Now I go every other week and really look forward to it. My nurse uses pediatric caths as well. The way she explained it to me is they hope for 1 good day out of 7 the first week or so and then as you go on you realize "hey, I have had 5 good days out of 7". I tried to go to 3 weeks and that just isn't going to work yet, I have hope though that I will get down to going once a month.

[Debgail]

THANK YOU ALL SO MUCH FOR YOUR REPLIES :kissing: :kissing
It really helped me alot to hear your stories and listen to your advice.I am set to do another instill of the same in 2 weeks and I am scared to go there again. Its weird ....I'm in be almost asleep and then my body wakes me on purpose as if to remind me with the thoughts and feelings of the other day lol!!!! ....I did get a hold of my gp and she called in some vicodin for me, so that has helped. Today I am still sore ...but Tues and Wed were horrible. I had no idea that an instill would leave me with as much residual pain. I have to say though I think my bladder(NOT my urethra) is better today....so if it continues for a week or so I might brave another instill...

I am encouraged by those of you who have them regularly and WELCOME any advice on getting thru this initial part. I also would like to know if any of you can't or wont have them and why. I know when I had my first one the other day my uro told me my urethra is tight and I actually bled too...so maybe its just me????????

Anyway thank you all so very much for helping this lady out!!!
Mucho hugs! Debbie

[FALSERIVER]

I Had The Same Installs About 6 Months Ago. If I Remember Correctly, I Got Alot Of Relief Out Of The 7 Or 8th Install. The First Three Were Painful To My Bladder, But Did Get Easier. After The Uro Finished My Series Of Installs I Went Approx. 2 Months Pain Free. Now I Am Seeing Another Uro And Taking Dmso Installs. I Find These To More Painful. Good Luck And Remember That One Day With No Pain Is A Sucess.

[SrMaggie]

The first DMSO I had was as you described. I rushed home and filled the tub with some warm water and soaked until the water was cold. Then I put ice on both places. It felt a bit better.
The next time I went the aftermath wasn't as bad. In fact, I've had two rounds of DMSO and I hardly blinked on the second round.
They did a cystometrogram once. That was more embarassing than anything. I had to sit on a special commode with electrodes attached at different places. They usually do two sets, but the uro said he never saw such strong muscle spasms.
I did 6 self instills of the lid/hep/bicarb. The first one was a challenge. After the first few of them, I did have visible blood in my urine. Didn't happen as much the last two times. I'm hoping to do it again at the end of this week. It really has helped. I don't remember feeling this well for a long time.
Hang in there - hang tough.

[Debgail]

Again, thank you all for your replies :smile tee I HAD to tell you all.....after 2-3 days after the instil I was still in urethra pain...BUT!!!! Heres the good news!!!!! I have had almost a week of very little bladder pain :woohoo: :woohoo: :woohoo: Even though the instill was horrible(especially after I peed and all the next day) It was definately worth it!!!!I am going back in another week and going to insist on a small cath(thank you lady who recommended this!!) and I am going to ask to be taught how to do them at home, since my uro said that was the goal.

I cannot express to you all what the difference has made in me. I have been all smiles!!!! Wouldnt you know it, I FINALLY get my bladder pain under control and I have been in bed coughing, sneezing and fevering with the flu for 3 days!!!! :headbang: not fair!!! lol!!

Anyway I am a happy camper...with laryngitis, a case of kleenex and a cough that sounds like gravel...but HEY...its the FIRST time in 6 years I have been pain free with ic!!!!

Thankies!!! :kissing:Debbie