Day after hydro....

[RAS6]

Everything went well yesterday for my second Hydro. The weather was HORRIBLE but we made it just in time. however my Doctor's first surgery went 4 hours instead of 2 so my surgery ended up delayed by four hours. It was rough waiting b/c I didn't bring my meds in and my pain was really bad from just stitting there so long. But things went smoothly. Afterwards my Doctor let me know that my IC appears to be progressing. I wasn't sure this could happen, but he did mention that was a concern when he brought up doing this second Hydro. He opted not to do a biopsy due to my blood clotting disorder. He didn't see any suspicious areas and thought the increased bleeding would just put me at a higher risk of a clot. He did say my capacity is smaller now than my first Hydro back in 2006 and that I now have "several areas of slight inflammation" but he said he wouldn't call them Hunner's Ulcer's. I have to go back in three weeks to see him and he said he would discuss these things more then. I am pretty scared about this, but am glad to know now why I was getting so much worse.
I feel surprisingly good today, but am taking it easy and plan on doing so the next few days as well. I learned last time not to over do it even if I feel great!!Plus my husband is off work and I like being taken care of for a change :)

Has anyone been told their IC is progressing? I am considered "moderate to severe" by my Doctor due to my symptoms and little response to traditional IC treatments. What worries me is that I will keep getting worse, I am only 26after all. I guess I'll have alot to talk to him about at that next visit!

Please pray my recovery will continue to go smoothly. There is a strong possibility that I will be getting a job offer next week and would like to start the week after. I need a change from my awful work environment and have been trying to get into this school district for over a year now!
Thanks!!

[sandramac]

Mine has been progressing over the years, My last hydro my cap was only 170 cc. 2 years before that it was 350 cc.
hugs Sandra :cat::cat::cat:

[Babs RN]

Mine has been progressive and my capacity is down to 90.

Hugs,
Barb:hi:

[verdicries]

rach, i'm glad it's over with and hope you continue to recover smoothly! let hubby take care of you!!

it sucks that the doc's surgery went over...that happened to me with interstim...i got to the hospital at 9:30 for a 10 surgery...i didn't go in till almost 2:30PM!!!!!!!!!!! PAAAAAAAAAIN!

i'm so sorry you have progressed :(. we are similar in that respect, we have progressed and fail to respond to normal treatment. that's why i firmly believe ic IS progressive--however, some DON'T progress b/c they actually get good responsive treatment--or their progression is so slow it's barely noticeable.

make up a list of concerns/?s for the doc appt so you don't forget anything and let me know how it goes. call anytime!!

[GriffsMommy]

Well I'm happy to hear it went well and you're not feeling too bad. Please do take it easy because I'm sure it was harder on your body than what you are feeling right now and you need to rest and heal.
I'm so sorry your IC is progressing. I can only imagine how scary that is. I don't think I'll ever have another hydro but I feel like if mine isn't progressing it sure as heck isn't getting any better. I seem to be like you in the fact that I have tried so many things and have seen so little improvement.
I was actually just saying to my husband that I feel like I take 2 baby steps forward in feeling better and then stress or something else happens and I take three steps back and feel the worst I've ever felt again.
I hope your dr has some ideas of how to make you feel better after seeing your bladder again. :grouphug:

[ICNDonna]

I'm glad you're home and feeling better. I just hope the hydro will give you many comfortable months.

I have had 41 hydros and the stretched capacity has varied from as little as 400 to as high as 900 cc. My last one was 900.

Donna

[RAS6]

Thanks everyone!!
Tracey, I was thinking about what you went through while I waited around the hospital. It is really rough trying to be patient when you just want to get into surgery!! I will be wruiting things down these next few weeks and I am planning on keeping a journal of how much I void and how much medicine I need starting next weekso I will be able to track if I have progress this time. Thanks for reaching out to me and I'll probably be calling you soon!

Thanks Barb, Sandra, and Donna for letting me know your capacities. He didn't tell me what mine was, I was VERY drugged up and he knew that, so he just patted my hand, told me very simply that I have slightly progressed and let me know we would talk more later.

Christine,
I am sorry you aren't getting any better either!! I didn't think I would try another Hydro, but since I see a fabulous IC specialist now and he suggested it I still think it is worth it, even if I don't get relief. He did bring up several suggestions after surgery, but again didn't want me to think about anything too much, I was very loaded up on pain meds. He mentioned trying Elmiron installs (I only tried it orally with no success) b/c my lining is so thin and I have inflammation now too. I would have to go through the drug companyif we try this b/c my insurance will not cover Elmiron and it would cost over $250 a month for me. I also would ahve to learn how to mix it myself and give myself the installs b/c the hospital is too far away to get them there. He also mentioned another Botox trial coming up soon that I qualify for and of course the Interstim trial at the hospital this summer. It is the newer and smaller model and should cost little to nothing if I go through the trial. He also said we could safely up my Neurontin if needed or even go on to Lyrica. So I have lots of options left, some simple and some more invasive. We'll see how I feel when I go back.


Thanks everyone!!:kissing:

[RWadeJ]

Thanks for posting this. I'm going to be having a cysto/hydro under anesthia done in about two weeks. I've had an in-office cysto done before but not the hydro.

I do think it will be good to find out exactly what is going on, though.

I hope you are feeling OK.

[snowgirl]

I have had over fourty hydro's as well. Capacity years ago 500cc' now for the last ten years barely at 175cc. My IC is progressive. Decreased capacity, increased pain level. Vicky

[RWadeJ]

Vicky
I am curious as to why you've had so many hydros. do they help for a period of time? Are you in alot of pain afterwards? How often do you have them?

My uro said mine will be more for therapuetic than diagnositc purposes, but, since I've never had one, I'm hoping the information proves useful.

At this point, I'm willing to try it, because I've had an increase in the severity of my symptoms, and had some new symptoms pop up, to.

Janice

[ICNDonna]

Hydrodistentions have been the one thing that has helped me most since my diagnosis in 1975 and I have had either 40 or 41. I have read that hydrodistention helps in about 50% of IC patients. I just feel fortunate that I am in that 50%.

I go anywhere from six months to 22 months between hydros; the past few years it's been about a year.

Donna

[snowgirl]

Vicky
I am curious as to why you've had so many hydros. do they help for a period of time? Are you in alot of pain afterwards? How often do you have them?

My uro said mine will be more for therapuetic than diagnositc purposes, but, since I've never had one, I'm hoping the information proves useful.

At this point, I'm willing to try it, because I've had an increase in the severity of my symptoms, and had some new symptoms pop up, to.

Janice

Yes I have them every 6months my capacity is only 175cc so after a few months my bladder is real bad with urgency and frequency so I need that stretch to get me back to wow 175cc tops. I also get the DMSO treatments. Yes the DMSO helps me. I am in very little pain in the recovery room I have one of three CRNA"s that have been doing my anesthetic for yours so they have a plan for me and we follow it everytime. I am spoiled in that manner as most people have to have an anesthesia resident. I always have one of my CRNA friends. My uro puts this cocktail in my bladder in the OR so when I awake in recovery room I have very little pain. Then I go back to the hotel and sleep last time I slept 4 hours straight with that cocktail not waking to pee. That is a blessing considering I am up at night no longer then 1.5 hours. It is for one day a fewhours I get to see what it is like to have a normal bladder. Some treatments stir up my bladder for a few weeks. My last treatment I only had pain the first day and that was it. It did not stir up or flare my bladder at all........... it was my best treatment yet. Also, my bladder looked the best ever yet as I have resigned and went out on disability my bladder looked like he said he has never seen. So, no stress from my job, no standing 10 hour shifts a day, no lifting and pushing of patients.

Hope your DMSO or hydro goes well. I started at the age of 25 back in 1986 and I am 46 now. It was these treatments that kept me working full time. If I did not have them every 6 months I could not have done it. I could always tell when a treatment was due believe me. I welcomed them. I still get them every 6 months even in disability. Vicky

[mary124]

I am another one that the hydros help. I have one every 6-8 months. Hope you are doing better.