1st rescue instillation not what I expected

[lonedog]

I had my first rescue instillation this morning. I read somewhere that the instillation would relieve symptoms for from 4 to 40 hours. Not so in my case; I am worse. More pain , frequency, urgency. Is this normal for the first one? The instillation contained heprin. Bicarbonate of Soda, lydicaine and kenalog (a steroid I think). Does it get better with time or is it supposed to work right away? Since hydrodistensions don't work for me anymore if the rescue instillation dosen't work I am at a loss as to what to do now.

[Romans8:28]

Hang in there! My first one just didn't do it for me either, give it some time!
They should begin to give you relief quickly soon! Sometimes the irritation of the catherization can also cause you to flare at first, but really should improve!

Though many do not have this problem, I also found i was allergic to the preservative in the instill meds. We have now switched to preservative free ones. I also was on kenalog but they do not make it preservative free so we have switched to solu cortef powder instead and for me that works! Even at first though with the reaction I would flare about 1-2 days then feel good for 3+! So hang in there! I couldn't make it now without my instills!

Shelly

[lonedog]

Thanks for the encouragement Romans 8:28. I will insist that my Doctor try it a few more times and ask him about Kenalog vs. solu cortef. Are you able to ride in a car comfortably now, take a long walk etc. ? Will you have to continue the instills indefinitely or will they put the IC into remission? How often do you have the instills done and do you do them at home? My uro will not let me do them at home because I am a male and he dosen't want to do more than one a week in his office. Thanks again for the encouragement; I was beginning to think about doing something stupid.

[Dixiefireball]

I first started my installments in the office. At first I honestly didn't want another one in my life. I wouldn't allow an installment to go back in my bladder for a long time because of the pain. (i tried three ) a year or so later. (trying to make a long story short.) i was up against the wall and tried different treatments after treatments no where else to go. My Dr. talked me into doing them again, but this time i would do them at home myself. I and my husband was trained to do so in the office. Still I hated them but I didn't give up. it took about two or three months doing them daily but I went into remission for 18 mths. Boy was all those treatments worth it. it just took getting over that hump in the road to see the other side. let me tell you to find remission is such glory! Yes i did come out of remission, but since my body/bladder is now use to my installments my installments does work more quickly and eases a great deal of pain. another important thing is to ask your Dr. for a low dose of anti. to ward off any type of infections that may happen while doing these installments. IF doing them in the office only a few days a week just ask for a sample anti. (one should be enough to stop any type of infection from starting from an installment.) The last thing you need is to get a UTI during all of this. Please give it a few months until you decide this isn't for you. Their are no ace in the hole so to speak when it comes to finding answers to IC. remember if that installment doesn't work you can always ask you uro to adjust it for you. It may take some playing around with the installment before you find what works best for you.
best wishes.
Rhonda

[Katrina]

Make sure you don't have an infection! I hope you find a way to get them to work out for you....it is so nice to have a way to get that fast releif! :grouphug: Hopefully with a few adjustments things will improve a lot!

[lonedog]

It has been 36 hours since I had the instill. I am getting worse by the minute. A couple of hours ago I took 2, 8 hour tylenols, 2 darvacets, and 1 enablex and I am still in a lot of pain. I don't think I will do this again. I am going to start on the Desert harvest Aloe Vera and have the uro do a hydro again. It has been 3 months since the last one. If that dosen't work I am going to go into pain management and get on the narcotics. I tell you I don't think I am going to make it. Life isn't worth living like this.

[Romans8:28]

I agree you really need to call your doctor and make sure you do not have a UTI! It sounds like you might have one!

I know many who the instills do put them into remission. Again check to see if you have a UTI, even if it doesn't show on a dipstick he may give just a few days of an antibiotic to be sure. They don't always show.

Then again you may be reacting to the preservatives, I did. Most doctors have never thought of this but there are preservative free alternatives to most meds. I have most of the NDC # too. If it does not respond to antibiotics or there is no infection really consider trying the other meds, before giving up!

Hang in there, there are many options to help with the pain. MY case is a little more difficult since both of my kidneys are full of stones and I have chronic infection too.., so getting my IC under control is hard but instill are a part of that, I am also on the aloe and have now been put on pain management meds. At times like this am, I actually felt normal.., usually then i push it! Though it is a balancing act, I now at least am able to use lots of different coping tools and get my pain under control! Yes sometimes I can take long drives or moderate walks and please understand I am my doctors worse case!!

Please call your doctor and let him know how you are feeling. I am sure they will get something to help you through and also test for infection!

[lonedog]

Romans8:28, I am somewhat better this morning. Just taking 8 hour tylenols and an enablex patch. Pain is relatively mild so maybe the instill is starting to work. I have lived with this long enough to know better than get my hopes up though. The uro checks my urine for infection every time I go in to the office and I don't have an infection. I will mention the preservative factor to him. Thanks for your help and hope your treatment program give you relief

[Dixiefireball]

Lonedog, I'm sure the installments has to be way worse for a man to have done, but if possible you should at least give the installments a far shot. Anything that can help you go into remission is worth trying right? Sadly their no ace in hole in controlling I.C even the I.C takes time everything takes time to see what will work what want work.

some infections can't be detected in the office and must be sent to a lab. why I don't know. I guess the dip sticks they use in the offices doesn't pick up everything they should? If your not any better or if the pain is getting worse please go in and have another urine check. A UTI can start in a matter of Min's to hours. I seen a post a while back where one woman was hurting really bad she went to her Dr. they found no infection. since they couldn't find anything wrong they wouldn't help her. The pain got so bad that night she went to the e.r. they did another urine check sure enough she had a UTI. After a brief period of anti. pain control from the ER she was better. (not remission, but everything was where she could control it at that time.) just trying to give you example on how fast a uti can come up.
Yes it could had been from the installment and all, but i wanted you to see how quickly things can pop up. what one person can't find another one can.

Exp. after an installment your porn to UTI's because anything that enter us down their can push bacteria up into the urethra causing a UTI.
I hope and pray that isn't what is wrong, and your doing better by now.

a few tips to help you with the next installment. if you have pain medicine take it twenty to forty Min's before the installment (take a driver with you.) if you don't have pain medicine, and have some type of nerve pill take one of those they will help you relax making the treatment go in much quicker and easier on you also.) if you don't have none of that ask the Dr. to give you something to help.
when you get home lay down and rest. using either an ice pack or heating pad. (which ever feels best to you.) drink a lot of water (this will help flush things more quickly and stop some of the burning if that is what is going on more quickly.) a hot bath or shower. try to get some sleep resting always seems to help.
when i had to do these in the office i would try to get my in the late evenings on a friday.that way i could come home to rest. My husband would be home shortly after to help with the children. by doing them on a Friday i had the weekend to get over the installment before returning to work. OH and ask for a latex free cath. you may also want to ask for marcaine that is a numbing medicine that some Dr's use in the installment. marcaine works quicker, last longer with less side effects. this could also be a plus for you.
please don't give up yet.
I hope this information helps you in some way.

[Romans8:28]

Rhonda is the best one for advice on instills, and her suggestions really helped me especially in the beginning!

Even my urologist tells me UTI's don't always or even a lot of times show on dipsticks. It has to do with being a nitrate producing bacteria or not..., also in IC patients there are often low level bacteria that can become inflammed that are very difficult to even culture for! MY doctor even gives ALL of his bladder symptoms patients antibiotics first, to see if they give any relief.

We have also strated adding gentamicin to my instills to help prevent infection! It is very soothing too! Just things to consider before giving up!

[Romans8:28]

Ok got a e-mailed that lonedog had responded, then couldn't get in here now it is gone!????

anyway here is the NDC # for the preservative free solu cortef
0009-0825-01, the is the powder only. The other one comes in an act-o-vial, where you push a button and mix the preservative in the medicine!
(kenalog has benzly alcohol)

sodium bicarb is preservative free.

Lidocaine contains methlyparaben which is not a big trigger for other but just me. Lidocaine or sesorcaine MPF means methlyparaben free.
Glad to hear in the disappering message you were better hope you have not gotten worse!

[Jennifer Warren]

There has been some great advice on pain meds given on this thread!

I had tried instillations with such negative effects until I combined it with my anxiety and pain meds. I had this preconcieved notion that it was somehow wrong to take narcotics preventatively. Society puts these stigmas on pain medicine that makes it so hard to feel comfortable taking them daily.

The only thing that has made my life function since my IC started has been pain medication. It took some hard work, but I was finally able to get in to see a pain specialist, which has been my godsend. She was sympathetic and understanding and asuaged my concerns about taking narc. pain meds.

The instills put my body into some kind of whole body flare because of the trauma of the catheter, I think. Now I go in every once in awhile when the pain meds are not working well enough, and get a one-time instil. When I do that, I take the pain med first, and a xanax because I anticipate pain, and things work much better.

Once the pain gets excruciating, it is an emergency on the body and is terribly hard to get under control. So at the first sign of bladder pain, my advice is to treat it. The meds work so much better BEFORE the pain gets out of control.

That is the only way I know to treat my IC. Don't give up! I felt the way you do, Lonedog, last year. Once I came to terms with the fact that I have chronic pain and have to take pain medications and I am NOT a bad person for having to take them 3-4 times a day, my life has changed. I can work again...sort of. Much better than a year ago.

Good luck. It WILL get better eventually. It might take some time, but it is worth working for. Maybe you will not have remission (like me), but you CAN FEEL BETTER even if you don't have remission.

Sincerely,
Jennifer Warren

[lonedog]

Jennifer, thanks for your post. I was just going to ask some questions about narcotic pain meds. I am getting worse again and the uro says he dosen't think the instill did anything for me and I agree. I have been in pain management before for another problem of about 6 months duration and have access to a good pain doctor who will put me on narcotics if i ask him to. My question is this: If I get on the pain meds and become active again (walking, driving my 4X4 in the woods, fishing etc., will I be further damaging my bladder because it will be getting worse but I wan't feel the pain ? Right now I am totally inactive because of the pain. At the very least I need to be able to get some exercise. I have a friend who has been on oxicotin for years and functions normally but his problem dosen't worsen with activity. Any advice will be appreciated.

Lonedog

[Romans8:28]

I have also just started on pain management as well! I still need my instills but have to take pain meds also. I have found one of the draw back is that when I feel better I push is and then have more pain. I have also found others often expect more, because I look better! I think we all need to learn our limitations, even on pain meds. I would encourage you to try the things you enjoy in moderation, when you feel better. Fishing is probably pretty safe, as long as you can have someone help you lift the boat etc. (lifting may not be a problem for you as it is for me). Walking also should be safe, just don't start out with a 10 mile hike:)! My husband loves driving our 4x4 through the woods, though this used to be an enjoyable pass time for me, I now find the bumpy roads etc. pretty painful. I think if I could drive, have control of the bumps and walk when I want to then it might be more tolerable!
Sorry you're feeling bad again!

[lonedog]

Romans 8:28, I didn't understand your post. You urged me to try the things i enjoy when I get better. The problem is there is nothing that will make me get better. If I tried to walk three houses up to my friends house I would get worse. I drove a car over to my moms house this AM about 5 miles. By the time I got there I was in a lot of pain. I basically cannot do anything except sit in my house. I was wondering if I got on the serious pain meds permanently if I could do the things I enjoy or would I be making my bladder condition worse since it would still be flared up but I wouldn't feel the pain. Today has been bad and I haven't done anything except the short drive to see my 86 year old mom. I am on a strict diet but it dosen't help. I am not going to do any more instills since I don't have any confidence in them and neither does my doctor. I am going to do another hydro in 3 weeks; if that fails then I am going to to get on the narcotics and stay on them. I need to find someone who can tell me if I can do anything that aggreates an inflamed bladder while I am on the pain meds.

Lonedog

[Romans8:28]

I apologize, I was speaking of when/if you take narcotic medications. I believe you can hurt yourself by doing too much once on narcotics, yet the reason they put us on them if also to help us get back into life. This is a balance I am learning daily! Narcotics do not heal, only help to block the pain. As I said I have been put on narcotics and use instills. Tonight the pain was so bad even on pain meds. I became really sick at my stomach felt like I was going to black out etc. Finally did an instills, along with my pain meds. and am finally feeling a little better!

I am sorry you have had such a bad experience with instills and understand completely your desire not to done them again. I don't blame you or your doctor for wanting to discountinue them. But for the sake of many who will come after you and these posts, it is very important for people to understand one instill is not a good example to know how they may or may not help you long term. We are all soo different and what may really help one may not help another, that is what makes this disease so complicated!

I hope that the hydro gives you some relief. (Without insurance I have not had the opportunity to try that yet..., )
I do hope you find what ever helps YOUR IC, helps you manage your pain and regain some of your life back!

[icsonja]

Dear lone dog:welcome: and I am glad you arereaching out for help, most all of us have felt like you do and we understand how hard things can be. I have been DX for 8 years with a very difficult case of IC and related conditions, I fought going on pain managment for a long time, until I was ready to give up and end it all, but thank God I found Jill and the ICN who kicked me in the hiney (nicely) and made me realize I have to fight. I want a life, it may not be the one I had before, but I am still important to my family and friends and working towards a cure.
I have been doing instills for about 3 1/2 years now,I personally find that how I react post instill depends alot on how prepared I was pre- instill. I always take a anti spasmodic and a pain med half hour before, then I get a snack and a drink and the remote and get my bed ready and then do my instill and go lay down, this is known in my home as mom's instill time. Also I never, ever reuse a cath, I use complete sterile epiupment beacuse it is very, very easy to get a UTI from instills.
I do take ms contin as needed and Soma (a muscle relaxant) I need them, my body and my brain do not make enough of the proper pain blockers to handle long term pain, so I see it as the same as taking insulin or heart meds.I have never had any sort of an addiction problem, when you are in pain you dont usually get the "high: that people who take RX pain meds for "recreation" do.
Please dont give up, life can be worthwhile, even when you cant see it, your experiences could save another person fron the suffering you are having, every life is precious, we can see that yours is and I know you will see it too, it is just so much to take in all at once.
Be careful of the off roading that could hurt, but fishing sounds wonderfully relaxing...catch one for me ok?
Hang in there, and I will be praying for you
Sonja

[lonedog]

I don't know why but the last 3 days have been less painful. I am only taking 2 eight hour tylenols every eight hours and was on an enablex patch. One word of caution. The enablex patches have given me a very bad allergic reaction. I am taking benadril and may have to go on steroids to get it stopped. I went back on the enablex pills. No allergic reaction but the side effects are worse. In any case I have had only a small amount of pain for the last 3 days. Od course I am not doing anything except sitting around the house. If I became active I am sure the pain would come right back. Never the less I am incouraged that I have been better. I now think the hydro I am going to do in two weeks may put the IC back onto remission as it has in the past. Thanks everybody for your encouraging words and advice. I was getting close to pulling the plug.

Lonedog

[Romans8:28]

So glad your some better :)!
maybe it's the benadryl, may of us find antihistimes help the IC pain.
The most common one used for IC is hydroxizine but some take benadryl and it if helps you may want to talk to your doctor about taking it on a continual basis! it's worth a try!

[Lishypaz]

I am really glad to find this website. I read all of these replies, and so many of my questions have been answered. I had my first rescue instillation today and was taught how to do it myself from now on. It was one of the most humiliating experiences of my life , there I was holding a mirror to watch her insert the catheter, and when I asked the nurse how other patients handle this, she got tears in her eyes and told me I was the first one they had tried this with, others had not had this amount of pain and urgency. My uro is very good, he relocated to my small town from the Cleveland Clinic and everything he has tried seems very new and different in our town. The instillation has put me into a severe flare, and I can't even step down on my feet. I have taken both a tylenol three and an ultram and I am still in excrutiating pain. It has also been mentioned to me that I should see a pain specialist, but I feel like such a baby sometimes! I had to train new staff for our school district immediately following the catheterization and it was extremely difficult if not next to impossible. I was told that the instillations were kind of the last ditch effort--I've had the TENS, the frequent hydrodistentions, am taking elmiron, sanctura, elavil, zelnorm, celexa and multi-painrelievers and I am SO frustrated today. I guess my expectation was that I would have some relief today. Thanks for posting all of your experiences.

[Dixiefireball]

Welcome to the ICN family. I"m so sorry you are suffering so. Do you know what type of installments you are doing at home? Sadly those first few ones can be heck on some patients. It took me doing them a month or two that was also increasing my treatments even tho it hurt very badly to three times a day (Dr's approval) to notices a true differences after I got over those few bumps in the road. I went into remission shortly after. Boy was that a glory advent in my life since being dx. I'm out of remission now, but still my installments help when I'm flaring badly, when nothing else will touch it.
sending you hugs and prayers.
Rhonda

[Kimchi]

Lonedog, I don't think you can further injure your bladder by being more active. I think it is imperative that we try to live as normally as possible. I have the instills every single day. Most days they help and some days they don't and I am also on Oxycontin and Lortab for breakthru. W/ all this plus other numerous meds, I am able to exercise, go to concerts, work and mow the grass, all sorts of things that I would have not done before b/c of the pain. I too have a 4 wheeler that I ride when I am not too flared. If you have questions like that, talk to your Dr. But I really don't think that you can further injure your bladder by trying to function normally. Good luck to ya. I have been on the instills for over 1 yr know. My secret is I use a pediatric cath, 5 french, that does not bother me at all. Barely even hurts going in. Not like the garden hose they use at the Dr office and after their instills, I do hurt very much.

[Lishypaz]

My instillations are 150 ml of lidocaine with sodium bicarb and I add an elmiron to mix before pushing it into the catheter. Does anyone else use this mixture and have good results? Does anyone else suffer more severely during their menstrual cycle? As I mentioned before, there doesn't seem to be anyone else in my town who has been deiagnosed with IC and as other have mentioned before, I also have fibromyalgia and chronic IBS. All of which, I am sure you all know, are often not thought of as "real"--I have been pretending for the last 8 years that I am "fine" but going into these wtihdrawl periods where I just hibernate with the exception of work and church, but I am tying to manage currently and I am glad I found this website!

[ISONormal]

....here's what I'd do.

Stop the Instillations.
Absolutely, get on the pain meds, immediately. No, you won't do further damage to your bladder. Your logic is faulty. There are two things you have to address with IC: the bladder lining and the resulting pain. Keep trying to do the medications and procedures that are designed to address the healing of the bladder (including the IC diet). But remember that the pain side of things CAN get worse IF YOU DON'T TREAT IT. Your nerves will "learn" the pain unless you stop them from learning it by taking your pain meds as soon as you feel pain, or on a regular schedule.

My two cents.