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Instillations - PLEASE HELP

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  • L. Thomas
    replied
    There is no pattern. Some people have great success and have little or no pain.ever.. Some have had your experience and it settles down in a month or so. Some start then have to stop instills, then months later start them again without the problem. Then there are also some that just have to stop.

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  • janet.
    replied
    Rescue instill ?

    Hello. Thanks to all for your advice re. My first rescue instillation. I just had my 4th (weekly) treatment. I had about 24 hrs of discomfort (not pain) with the first. After the second and third it got better (closer to 12 hrs/end of the day). Yesterday was #4. The procedure itself is going better (I originally had a hard time relaxing;the Valium suppositories seemed to help). I live close so the drive is not too bad either, although I clearly see the benefits of doing it at home if you/the patient is comfortable with the procedure. (I am not there yet.) MY PROBLEM IS-a after the fourth procedure I was VERY uncomfortable all night and so far today. (Burning urethra;general discomfort in the area due to burning...it is still present 25 hrs later but getting better). Is this typical? Has anyone else experienced this? Also I just felt sick to my stomach last night which is atypical for me. Has anyone has adverse reactions to this treatment? I have no desire to stop. My nurse has been great and she does put lidocaine gel in the catheter. It just seemed odd to get better then worse. Any thoughts? Thanks to all..

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  • Mothergoose
    replied
    I too learnt to self cath this week.

    It was time, I have retention, and I have been in total retention quite a few times over the summer, each time I have just gone to my own clinic, they know me well there, and I get looked after quickly, they may not understand IC at all but listen to anythig my Dr tells the nurse as to how he wants things done, not the way their protocol requires.

    The last time I was in total retention I was in the city, and had to go to a big ER, this was a very trying expirence, they knew nothing about IC, so figured if I had only gone 4 hours without peeing there was no need to hurry anything, I could wait in the waiting room for hours.

    Anyways after that I wanted to at least be able to self cath in emergencies, I never want to be in this position again. At the sametime my uro had sent a letter to my GP that he wants me self cathing 2x's per day. So it was time to learn.

    I went in for a lesson this week, it was a crowed small room. There was the teaching nurse, a student NP there who wanted to sit in, my husband came to learn too, as he knows if I am in total retention, I quite likely will be in too much pain to do it myself.

    I came home with a quite irritated bladder, with a lot of urgency, the nurse teaching was very good, but dosen't know anything about IC, VV, or too much about retention, and that these conditions cause things in this area to much more sensative.

    By the next day my bladder felt much better.

    I also was due for a pap test so I had this done at the sametime.

    I have not tried it on my own yet, but I am comfedient I will be able to do this myself, I just need to gather the things to do it at home and get an RX for the supplies.

    The nurse also said mine was the only partner she had ever had come into learn as well, felt he was very progressive, in his views. It was his idea not mine, but I am glad he did so he can do it if I need him too.

    MG

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  • L. Thomas
    replied
    I have been doing home instillations for several years now. I learned at Dr. Dell's. He teaches instillations in 3 lessons. I have a link in my signature that explains the steps I use for instillations. The 3rd lesson I did an instillation from start to finish in his office. I was completely confident after that lesson.

    There is no way you could be more apprehensive than me about doing home instillations. There are 1000's that do home instillations. Your MD should give you instructions and you should be able to contact the office if you have problems. Dr. Dell told me not to hesitate to call his office with any questions. He also said not to worry that I could come back to the office any time if I needed help with anything. That also reassured me that I would be able to do the instills at home.

    I think you will be fine learning how to do the instills at home. If you have any questions I will be happy to share my experiences with you. I check the board frequently and try to post to new threads.

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  • nanawaggs
    replied
    No Problems!

    Hi, Jocotter ~ Well, I'm home from my appt to learn my self cath....wow, it was so simple. I think mixing the meds will be more nerve-wracking! Of course I did have "3" hands, haha, as the nurse assisted with holding the mirror. I love the idea of the Walgreens mirror. I'll try mine first and if it doesn't work, I'm heading to Walgreens. (Thanks, Omaklackey!)

    I was the talk of the front office as I left since they said how easily I got it! Not too bad for an old lady!!!

    Take care and here's another one who can now say I can do it too!

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  • Jocotter
    replied
    Thanks for the info. I did wonder about having a mirror and you already answered the question! I believe my doctor's appoint is coming up in a few weeks, so I may ask about it.

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  • Omaklackey
    replied
    Its definitely NOT hard! And with practice it becomes quite fast. My instill last night took exactely five min. start to finish. That was including washing and alcohol swabs and doing everything clean and safe. I'm NOT advocating rushing at all, I just timed myself out of curiosity! I have a mirror that actually has this funny little foot on it that I was able to slid under the toilet seat in front of myself while I sit on the toilet and then the mirror actually pivots so you can see what your doing. My hubby found it at Walgreens and it works like it was made for the job. I found the toilet the easiest for me personally because I don't bend very well, but I'm used to that angle. The first time was by far the scariest. I had to get over some self image/body issues but once I did it was quite easy. If anyone wants to message me, I can show you a picture of the funny mirror, or a link. I love it! http://www.walgreens.com/store/c/stu...118298-product

    Leave a comment:


  • nanawaggs
    replied
    Hi, Jocotter ~ From my understanding of those here on the ICN, it's pretty easy to do self instills and a whole lot more convenient. I'm learning today....we're going on a little vacation up in the mountains and since I've been retaining up to 300+ cc's the time has come. I'm sure you'll hear from others who do them all the time, but I'll try to update with my opinion later today.

    Take care,

    Leave a comment:


  • Jocotter
    replied
    Is it hard to learn to self instill? I'm not sure my doctor would let me, but he is a very understanding doctor and the day may come where I would want to do that. Right now I'm doing instills once a week.

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  • L. Thomas
    replied
    Originally posted by Jamie1983 View Post
    I feel like I know more than my doctor because I do research on IC every day and I live with it every day.. I hate this
    Dr. Dell says that most MD do not diagnose IC until it is at the advance stage. IC is the great immitator...it has so many different combinations of symptoms. He feels if IC is treated in the early/mild stages that it will keep the IC from advancing. Instillations are a newer form of treatment. Information on IC, including sessions at medical conferences or information from drug companies is very limited. If the doctor isn't aware of the effectiveness of a treatment they probably won't try it.

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  • nanawaggs
    replied
    Hi, Jamie ~ I'll be praying for you. I'm learning my own instills this Fri. I have have them pretty much 2-3 times a week for the last 1-1/2 years and it's time to do them myself.

    Hopefully you can relax a little to help calm your bladder down. Please keep us posted with how tomorrow goes.

    Prayers,

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  • Jamie1983
    replied
    Thanks

    Thanks to all of you that responded to me. It really means a lot. I am praying tomorrow will go smoothly and my doctor will let me do the instillations myself. I will be devastated if she makes me stop them. I have been through 9 horrible doctors and this is the first practice that knows how to even mix an instillation and understands IC.. They just have patients that get better from 6-12 instillations and I am obviously a more severe case, so they need to treat me differently. If the instillations are helping, I don't understand how she could tell me to stop doing them, when there are lots of people doing them.. please wish me luck tomorrow - my bladder is throbbing from the stress... I just want her to agree with me.. I feel like I know more than my doctor because I do research on IC every day and I live with it every day.. I hate this

    Leave a comment:


  • janet.
    replied
    Rescue instillation

    Thanks for the advice. The smaller catheter and lidocaine makes sense. I have no further instills scheduled. I had a DSMO on 9/19, so I thought this might give it an extra "boost." I have to get back to work. At this point, if it can not really hurt me (other than some short term discomfort/pain)- I am willing to give it a try. My work schedule did not make it possible to do the rescue instillations, but I may have some brief "flex time" so this could be a new option. I do have a very small bladder capacity, so maybe the full DSMO and stretching of the bladder is advantageous.(I continually wake up at 2-3am and rarely go back to sleep before work. ) Recent falre up has had such a HUGE impact-I am hoping this is going to further help the DSMO. I have had good responses to the DSMOs in the past (the first lasted over 12 mo.). However the time between has been declining. Regardless just over 4 years since my first-so not so bad in the big picture. I did also try a chlorpactin treatment about 3 mo ago, but it really didn't help. NEXT TREATMENT PLEASE...

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  • L. Thomas
    replied
    Originally posted by momw/ic View Post
    There are many people who do the installations themselves once or twice a day. I used to but moved out of state and my new uro won't let me do it yet. I say yet because I'm gonna keep bugging him until he lets me. It's a small town and he has never had anyone make such a request so it's a new concept to him. I keep telling him "that doesn't make it wrong...just makes it different".

    In my opinion the self home instills have a much better result. It's easier, you can do them when you need them without having to wait for the doc office to be open or have an appointment. For me, there was less irritation and pain from the catheter because doing yourself causes less trauma to the body since you can go slow, adjust the catheter size if you want and lubricate with lidocaine jelly if you want. A lot of docs don't use numbing gel at all when the use catheters on patients. If you are doing them at home you don't have to try to hold the meds in as long either since you know you will get another later that day or the next day. If your doc is concerned about that it's just another pro for self instills. I don't ever hold mine more than 2 hours - if I can wait that long. Did your doc say why she wants you to stop doing them?

    If she won't let you do home instills maybe another uro or your family doc would let you?
    If your doctor is receptive to working with an IC specialist have him call Dr. Dell. He is very happy to discuss treatment with doctors. If you have problems contacting him please let me know.

    I have been doing instillations for several years. At first I needed them daily. Now I do need them almost daily durnig seasonal allergy season. The rest of the year I need one maybe every 4-5 weeks.

    There are links in my signature that include articles on treatment of IC. They may be helpful.

    Leave a comment:


  • janet.
    replied
    First rescue instillation-help

    Hello. I have had 4 DSMO/hydros but all have been under general anesthesia. I am trying my first rescue instillation this week. I HATE cathers. My urethra hass hurt after the procedures in the past. Are there different types of cathers or any advice for discomfort/pain after the procedure? Thanks for any suggestions.

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