Hydrodistension,Cystoscopy&Bladder Wall biopsy

[cbrash]

After reading the the pros and cons on this forum about the cystoscopy and hydrodistention I decided I would have the procedure .My doctor had suggested it and felt that it should improve my IC.I had the operation on the 16th of November. The doctor assured my husband I would feel great relief after two days and that I have a minor case of IC. Unfortunately I have been in a flare since the procedure and have a new pain when I urinate that feels like a tear in my urethra.(Some part of the anatomy in that area) I also feel my insides cramping and don't know how to rectify this. I haven't talked to the doctor but see him on Tuesday. All I know is I don't want to eat anything because even IC friendly food doesn't help. Drinking water is sure to lead to the ladies room. I directed my husband by cell phone today to the restrooms in Home Depot because I know where every rest room in my town is located.I didn't even get dressed on Friday because I didn't have the energy. The pain is relentless and I am not on any pain medication.I feel badly for my husband because every day when we wake up he asks me "Are you better today?"If I have a mild case of IC then those of you with the severe cases have my complete sympathy and prayers. It was my decision to have this procedure and I just wanted to input my experience.I know this has helped so many of you. cbrash

[ICNDonna]

It sounds very much like you could have an infection. You really should be checked as soon as possible.

Donna

[Ashelliak]

I agree with Donna. I think you should get checked out and see if your doctor can maybe give you something for the pain. I hope everything works out ok and that you are feeling better soon! Take care and keep us updated. :smile tee

[cbrash]

Thank you for your advice. I took 500mg of Levaquin for 5 days. I have an appointment with the doctor on Tuesday and hope to have this situation resolved. It's a three hour drive without stopping so I'll try and make it a fun trip by stopping at malls.

[cbrash]

I wanted to update everyone who replied to my thread on Hydrodistention,Cystoscopy and Bladder wall biopsy. I saw the doctor on Tuesday and after we talked he decided to try the procedure that puts the Elmiron directly into your bladder. Dr Samowitz (wonderful) catherized me and poured the diluted Elmiron into my Bladder. He said they have been having great results with this procedure. I had to hold it for three hours (the amount of time it took me to drive home). I woke up WEDNESDAY morning free of pain and have pain free four days! I continue this treatment once a week for five more weeks. I also don't have the frequency. I am so grateful to be able to get out and do errands and see friends. Dr samowitz said there is a 50% chance of improvement with the Hydrodistention-it didn't work for me but the instillation of the Elmiron worked like a miracle. I hope this gives someone else a chance to look in to this procedure and I hope this information can help all of us who suffer with IC. There are sunny days!!!!CB:woohoo:

[Briza]

Do you know if there was anything instilled besides Elmiron? I've heard that some drs are doing this now, but sometime it's a cocktail of ELmiron and some other stuff. Could you find out from your dr exactly how much of what was in the solution? Many thanks in advance! Glad to hear you got some relief. :):)

[cbrash]

I see Dr Samowitz on Wed for another treatment and I'll ask him if anything else is mixed in with the Elmiron. I have had the lidocaine-heparin cocktails and the DSMO (SP)treatment and had relief for about one or two days. As of today I have been pain free and frequency free for five days. I know it sounds like I'm bragging....but I hope this treatment can help others with IC. I'll get the ingredients (if there are other ingredients) and the dosage. I do know that I take my Elmiron to him and he uses that and that the treatment is once a week for six weeks. But if one treatment helped just think about the possibilities! I am also on Elmiron 200mg 2x a day, 25 mg Elavil, 20 mg hydroxyzine HCL (at night), pyridium 10 mg -3x a day.I'll post a message after I see him.
cbrash

[Briza]

Thank you! You definitely have bragging rights! :) Thanks for sharing. Looking forward to your post after your appt.

[Babs RN]

What a great sounding doc--where is he?

Hugs,
Barb:smile tee

[cbrash]

Babs, I see you are in Merritt Island, FL. Dr Samowitz has several offices. One in Aventura and another in Pembroke Pines. It's a three hour drive from Vero Beach where I live. He was highly recommended by several members on this forum and I am really glad I pursued their recommendation.He treats IC patients because he really cares about the people who suffer with this and genuinely wants to help. He is extremely smart and up to date and even ahead of most of the doctors that treat this condition. I decorated the Christmas tree and put up all of the outside lights-something I couldn't have done last weekend.I see you have several severe medical conditions and feel badly for you. This forum has saved me in so many ways.

[cbrash]

Hi everyone,
I went to the doctors office today and had another instillation.There will be six all together. One a week for six weeks. This was my second and I was almost pain free. This week was amazing because I was not in pain , did not have frequency and had a ton of energy. My front yard looks like a drunk light person decorated it. That's because I never put up outside lights before and I'm not Marthat Stewart.I asked what is in the cocktail and here are the ingredients:Elmiron, Heparin (SP), Kenalog, Sodium Bicarbonate and Lidocaine(sp).I take my prescription Elmiron with me for the doctor to use. I hope everyone who suffers from this will be able to find a treatment that gives them hope for an IC free future! cbrash

[RuthP]

I have spent the last 3 yrs doing all the different treatments, hydro 4 times, DMSO, hydrodilation, elmiron. Pretty much all that they know to do. 6 mos. ago my uro. told me that they have done pretty much all they can do and that I will be on narcotics for the rest of my life. Now today my uro. is sugesting that I think about a pace maker which is a nerve block in the bladder. The problem with that is it doesn't last more then a year and I will be back right where I am now. After that is a Bladder Replacement in which they make a bladder out of you intestines. The one thing my uro. kept imphazing was that even then I will still have the pain.

What i am trying to do right now is figure out if either pocedure would be worth it. I think for the time being I am just going to concentrate on my diet and getting my pain meds where I could atleast function from day to day

[cbrash]

Ruth, I am so sorry for all of the pain you have endured. My doctor told me they are no longer doing the procedure where the bladder is removed and a bladder is replaced . He said that the women who have had this done still suffer from the pain after the procedure. I am fortunate that the Elmiron instillation and staying on a strict IC diet has helped me. I wish you could get the help you need but know that we have this forum and it's a good way to communicate. Not many people understand IC.Carole

[ICNDonna]

cbrash: While cystectomy with an internal pouch is not common for IC patients, the procedure is still being done. We have several who regularly post who have had this surgery and had success with it. It is most definitely a last resort, but in some instances it is the only thing left.

Donna

[kjd]

Hi

i am so sorry you are suffering so much I realy feel for you. If its any consolation I have the same procedure last year and I was suffering just the same as you and was convinced I had done more damage by having it done.
I felt like my urethra was so sore and painful that going for a wee made me cry. I also had a urethral dilation which I do not recommend.

Anyway my urol said that I was in more pain due to inflamation of the nerves which he didnt warn me about. anyway after 6months the additional pain finally calmed down so dont worry I am sure this pain and discomfort is not permanant and you have just upset the nerves.
i would recomment seeing your doctor about some good pain relief (this is what I did) and some antibiotics in case of infection.
Dont worry about your husband, he loves you and wont mind looking after you. At the end of the day this isnt your fault is it so there is no need to feel guilty
take care
x

[Briza]

Carole,
Thank you for posting what was in your cocktail. :)
I'm going to talk to my gyn about it next appt. I know a lot of us have gyn's managing our treatments....I wonder if they do instills. If you could pm me your doctor's name, phone # and email (if he/she has one) if my gyn has any questions he could consult with your uro. I'm trying to avoid having to see another uro, but at some point I'm probably going to need to establish a relationship with one, just in case, but for the time being I'm very happy with my gyn.
Thanks again!
Best wishes