Enormous increase in pain after instillation

[Lishypaz]

I gave myself my first resuce instillation on Friday--I actually tried on Wednesday and Thursday with too much pain and no success! I was successful on Friday but I am now in the worst pain I have ever had! I've been diagnosed with IC for two years but have had the same symptoms for almost 18--I just now think I have a good doctor with some experience. I have tried everything this weekend--heat, ice, various combinations of pain relievers, etc... I am bleeding slightly out of my urethra--its actually little clots. Is it possible that I put the catheter in too far and nicked my bladder? I immediately felt a bad spasm and I have been sobbing periodically for the last 72 hours. The pain comes on so quickly and harshly that I go into immediate shaking, convulsive sobbing, and my teeth chatter. I have called my uro's office this morning and they are going to call me back. I am more firghtened than I have ever been because this is so surreal. For this week I can work from home for 1/2 the day and then go in during the late afternoon. But today, I don't think I can go anywhere! I run an afterschool program with 140 kids and I need to be on my feet and ready to respond to crisis if necessary. This has NEVER affected my life in such a dramatic way. I have some tendencies to be a work-a-holic and in the last few years have had to learn to stay in bed mostly on the weekends, and let my Assistant do a lot of the "heavy lifting." Today, though, I feel pretty hopeless. I am jsut sitting here trying to answer some phonce calls and e-mails and the tears just keep coming because it hurts so bad! This is after the codeine and vicodin! Has this enormous pain increase happened to anyone else after an instill? How do you cope? My meds are as follows:

Elmiron 100 mg 3X daily
Sanctura 2X daily
Elavil 50 mg nightly
Celexa 100 mg. nightly
Zelnorm daily
vicodin or codeine prn

[kadi]

Hello,
You might want to get checked for infection, especially since you had several attempts at catheterizing Weds & Thurs. If you bumped around trying to insert the catheter & finally did, you may have accidentally transported external bacteria into the urethra.

If the urologist's office does not call you back, please consider going to the ER or Urgent Care to be checked for infection...

Sending a hug & hoping you feel better soon-

[ICNDonna]

I agree with Kadi. You definitely need attention. What kind of catheter are you using? If it's a straight, hard one, it's possible you scraped your urethra, which could explain your current pain. And it's very possible that you have an infection.

Donna

[Lishypaz]

I did get called by the office and had to go in to submit a urine sample--they also said to discontinue the instillations temporarily. I was also told to stay off my feet. A nurse called a couple of hours ago and said that there is no obvious indication of infection, but that the lab results take 2 days. I am using a 14 Fr rubber latex catheter supplied by the uro office. I use KY Jelly as the lubricant, and the sterile pads they supplied me with to sterilize the area, so infection should not occur, but something did! I believe that I inserted it too far--I could actually feel it scrape the bladder, I think. The bladder was already pretty inflamed, I am guessing, because of the pain necessitating the emergency instillation in the first place. I am frustrated because I have to "stay off my feet" though the pain is not improving and the work will just pile up. I am working from home, but we all know that is not the same as being there! Another problem seems to be that it is almost impossible for me to empty my bladder, but I am leaking a little now. Not a problem I have had since my first bout with Detrol and then Sanctura. Does that happen to others as well? The normal course of action in the past has been for a hydro-distention about every other month of when I think that pain is too overwhelming and it begins to interfere with my normal work schedule. We introduced the instillations because the TENS treatments worsened my bladder symptoms instead of improving them. I was told to discontinue the pelvic floor rehabiliation at that time, I stopped going in for the TENS treatments, and we were going ahead with this course of action before talking about a surgical procedure. Does this sound about right for others?

[blondiescomet32]

You are on an awful lot of stuff. I'm worried for you. Please ask your doctor about the meds you are on. Also, ask him about Prosed DS which atleast will kill the majority of the pain for you. Due to your intense pain it may take a week or two before you feel some serious relief but as a 14 year IC'r I know that PROSED works. Doesn't elavil make you exhausted all the time? I found that clonazapem gives me a good night sleep without interuption and I feel great the next day. I'll keep you in my prayers. blondie

[ICLori]

I agree with everyone. I feel so bad for you. I don't think any permanent damage was done, possible just some scraping, which can sure feel just awful. But our bladders are kind of like our mouths - we can bite our cheeks and it's really scary, but it turns out to be not anything serious and it does eventually heal up. Hopefully maybe your doctor can take a look with the next hydrodistention and confirm that everything is just fine.

It sounds like this experience hasn't been such a good one for you. I'm wondering, were you able to tolerate the instills when the doctor gave them, or did they have you start self-instilling right from the get-go? The reason I'm wondering, is because that would tell us if you are reacting to the instill ingredients itself, or if it has something to do with the at-home process rather than the ingredients. Sometimes people have a really hard time relaxing and it can be painful then. Also, I agree with everyone that it was good you were checked for infection - it might be a slow-growing infection that might not show up at first.

There is a really long list of potential IC treatments to try - some that come to mind are Xolair (that one sounds very exciting, if you can do a search on the boards, you'll see), Adderal (that one I'm scared to try, it's an upper), Cytotec (has helped a few people, but not others...maybe worth trying anyway, as long as you are not pregnant), Cyclosporine-A (scary, risky, but maybe worth trying if you really want to avoid surgery and have tried everything else), Singulair/Atarax/Tagamet combo....oh gosh, I can't remember what all else now. But there are other things that maybe you might want to try. Plus some people have been helped by natural remedies such as aloe vera, Algonot, quercetin, and some others.

Oh, some people get better with Neurontin or one of those family of medicines....

Well, I'll probably think of more meds to try later....the only thing is, sometimes doctors have their favorite remedies and they won't let you try all of the other ones.. :(

I assume you have already tried the trio of Atarax, Elmiron and Elavil for at least six months (preferably a year?) Argh I see you are on two of those already, sorry....hmmm....maybe the Elmiron just needs more time to work? Then again, it doesn't work for everyone unfortunately. :(

Blessings, hope you feel better soon,
Lori

[Lishypaz]

Thanks, everyone, for all of your great insights. My doctor is pretty willing to try anything--he's moved here form Cleveland Clinic and seems to have done a lot of research with IC and many female-only related urological symptoms. The nurses here are always amazed with what he is up to next because I believe I am the only one with "advanced IC" in the office (its the only urology office here and has 2 other uros), so I think I will print off some of these messages and go over them with him.

To the question of relief with an instill inteh office-yes, I did find some relief. It is so hard, as you all know, to pinpoint which comes first with all of this stuff, but the day of the instill was awful and painful the first time--the second day started bad but got progressively better. Then, for about 6 days I was pretty decent, pain scale of about 3 or 4 (which is low for me) and then gradually the pain increased so I naturally thought the instill would give relief. Instead, I fell I caused damage. I am sure I will "get it right" and my doc will have me go through another self-cath session with a nurse in the office. For now, I am on hold with the instills and hopefully the hydro will give relief. My insurance will cover a hydrdo every other month, I teach some classes around that often to new staff for our school district, so that the schedule I have been on.

It does seem that I am on a lot of meds. I, like so many others, seem to have the "trio" of diagnoses--FMS, IC, and IBS. So often, I blame myself for feeling so lousy becuase it has taken more than 18 years to get to thes diagnoses together, and so many docotors, nurses, and PAs have acted like I have created these symptoms, illnesses, whatever in my head. :mad: :mad: Now that I have these illnesses diagnosed, I am on so many medications. Until this point, I have gone the homeopathic route and included massage, yoga, and some other relaxation techniques and now I feel like I am an experiment in Western medicine. On the days that I am feeling good, thats okay because I feel successful. On the days that I feel lousy (or like now, can't sleep), it makes me feel inadequate! I know, join the club!

Currently, as best as I can recall, I am taking the Celexa and ultram for the FMS. Zelnorm and senokot and IBS diet for IBS. Elmiron, hydrodistentions, emergency instill cocktails, sanctura, elavil and either codeine, darvocet, or hydrocodone as well as the IC diet for the IC. I also take ortho-tricycline lo to avoid ovarian growths and endometriosis--the thing that seemed to start it all. Has anyone here successfully just stopped taking the meds and gone into remission anyway? I have a crazy theory that this might work for me! I went through years of testing for MS--spinal taps, MRIs, CT scans, the works! I was medicated then, as I am now, to the hilt! I was having many of the same symptoms I am having now plus numbness and weakness (this still rears its ugly head from time to time, but now I am good). One day, I got sick of it all and went off of everything! I took no medications for anything for quite some time, tea was my answer to everything. I won't say that I recovered completely or had no symptoms, but I was certainly no worse. That is the point that I am at now, that I am taking all of these medications but still have unrelenting pain!

I am digressing from the original topic, I'm just so frustrated that its now 5:20 in the AM, no sleep, I've been doing some computer work since I can't sleep and I am on all of this medication that is supposed to make me sleep! I apologize, thank you all for your help, and now I will turn to my other answer which is prayer! I will keep all of you in my prayers as well.:angel:

[mare mare]

Do you think the latex is irratating you? I've had problems with latex before.
Just a thought!

Hope your're feeling better!

Hugs, Mare Mare

[wolfaleena]

i have to self cath and have done the instillations at home as well.. i could not tolerate a catherter the size you are using..
I use an 8 fr. catheter..
I still have pain when a cath. but not as awful as when they gave me a 14 fr cath. We are all so different, and unfortunately we have to try all these things before we find what works and what does not for us! It is very frustrating, but keep the faith~ I hope you are feeling better today.

[Maddie]

Dear Lishypaz, I'm sorry your having such a rough time. I had pain increase after my first installations as well. The more I did it, I think I responded to the treatment because it did not hurt anymore. It hurts when your having a lot of inflammation. Did you say you were on an anti-inflammation drug like celebrex or mobic? Also I hear some people try vistaril or atarax, to decrease mast cell activity....inflammation. You could talk to your doc. Hang in there, perhaps as you get treated your pain may decrease too. Good luck.:pray:

[Cath5]

I thought the same thing, that's a big catheder. I've been cathederized when in bladder spasm and not able to void, and it can be painful. It sounds like you scratched/scraped the uretha, and are having spasms- can you use ditropanxl for spasms?
hope it settles down for you.

[icnmgrjill]

I think you've got some investigating to do.

(1) The 14F IS big and would hurt me. I would definitely ask for an 8F if possible.

(2) Could you be having a latex allergy? It's possible. Latex can provoke horrendous, even life threatening actions in some people. I have one good friend who just suddenly two years ago, developed a near fatal sensitivity to latex. So, ask if you can try a non-latex too. That might be worth.

(3) Most of all, though, whenever you describe a gutwrenching shaking sensations as you did, I always suspect infection because that's what happens to me when I get a bad bladder infection. I'ts like my whole body shakes and shivers, especially as I urinate. Just horrible. Given the fact that self cathing absolutely increases your increase of infection, it's good to get this cultured anytime you have that sudden symptom.

Also, please check out the self help tips in the ICN Patient Handbook, one of which is dedicated to finding many ways to make instillations more comfortable, including adjustments in meds, etc. http://www.ic-network.com/handbook/

Lastly, one more story. I had another good IC friend who did home instillations successfully for years and then one day it caused horrendous pain. Long story short... The pharmacist mistakenly used a strong salt solution rather than DI water when he created that instillation batch. Think about it. What's one of the earliest forms of torture but rubbing salt into open wounds. DI water is "deionized water" and it's neutral, used often to make water soluble suspensions in various labs.

Sending healing thoughts your way!

Jill

[Lishypaz]

Thanks for all of the healing thoughts. I thought I might update since things have gotten markedly better. I went in for another resuce instill with a nurse and the doc said I could continue to come in for office visits if I wasn't comfortable but I got the courage up to try again. I had my first experience of NO PAIN for 21/2 consecutive days! That was the first time I can remember having no pain except the feeling from anesthesia following my last hydro. I am continuing with little to NO PAIN with do-it-yourself instills. I am hoping that others have this same experience.

God Bless!

[wolfaleena]

i hope you continue to get relief... what are the meds you are using in your instills and how long do you leave them in?

I have done them at home many many times. for years. sometimes they have helped other times not.. but i am sooo happy to hear you are getting relief i wish you continued success with them...
And congratulations on finding the courage to do them yourself.. it is difficult to get that courage.. if you are not a medical person, it is not an easy thing.. But you have done it .. Hip Hip Hooray for YOU!!!!
Now you have something that you know you can fall back on !!! Keep your chin up!!

[Lishypaz]

My instilles are sodium bicard with lidocaine and elmiron--I have to take a pain pill about 45 minutes before and then one every 5 hours that day, but then I am having relief with no pain pills for abpou 2-3 days afterwards. On Friday, though, I pulled a muscle in my stomache (don't ask!) so now I am in a different kind of pain. Also, I think that diet is helping considerably as well.

Thanks for the good thoughts!

[Freckles]

Has anyone ever had a doctor that refused to change their catheter size? I just spoke with my doctor about giving me smaller ones because these (size14 ) hurt me so bad. He out and out refused. He said that he could put one twice this size in me, so he would not change the prescription. I'm in shock. I really can't imagine why a physician would not do this. I'm in Tampa Florida and if anyone needs a reference for a physician, please email me privately and I will tell you who not to see. I begged for lidocaine gel as well with no luck. I guess he prefers me to suffer.

I really can't believe it. This doctor has treated me horribly since I refused (twice) to have the interstim put in me. He told me his "friend" does the implants and it was time for me to do it. I told him that I have read up on it and it is more for frequency than pain. About a month ago at my appt, he suggested it again and again I said no and he got up and walked out of the office, he did not even finish my appointment. Can you say Kickback? Why else would he refuse to treat me after I refuse to have it implanted? I so wish there was a way I could legally go after this doctor. Has anyone ever heard of anything like this?
Karen

[wolfaleena]

that is insane freckles. email me privately to let me know who this monster of a doc is?