Had my 1st hydro done on wed. 11/15 :(

[cass2376]

Hi all! I had my first cysto&hydro done wed. and I am messerable!! I have had surgery on other things before, but this tops them all!!! I feel like I have to pee constantly and it is extremly hard for me to actually pee. I have to really strain and then that causes more pain and bleeding too. I have a lot of pain which I was told is normal. I can't get up from bed or couch w/out help or I will break into tears from the pain. I walk around hunched over and w/ a pillow holding my stomach so my bladder does not feel like it will "fall" out of my stomach. I know that does not make sense but that is how it feels. The first day I peed alittle at the hospital so they let me go, but it took me till 3:00am in the morning to pee agian, almost 10 hours later!!! And it is still really difficult to go. Anyway, sorry to sound so depressing, but I was just a little confussed w/ my syntoms because I read about the others that felt better in a few days or went right back to work?!!! I guess my body is just taking it harder than others. I was told that my Doc. destended my bladder twice " just to make sure" I also had a bladder biopsy "just to make sure also"? Well, just keep me in all your prayers cause I am really pretty miserable. I hope anyone else that is recovering from this is doing better than me and will get well very soon. Take care all of you! And thanks if you read this whole thing:)
God Bless, Cassandra:angel:

[worryrock27]

that was my first procedure ever with this disease, i thought it would make it better, boy was i wrong. that was the worst pain ever and it really did nothing for the symptoms after. the worst part is my uro. wouldnt give me any pain meds. he told me to take motrin. the only real symptom relief i have ever really gotten personally is folling the no acid diet, or preservitives or anything really but the ic cookbook (a taste of the good life) really helps make it easier. i dont know, i hope you also, get well. but hydro whatever teh heck didnt work for me, just made things worse. good luck.

[lindagjanssen]

[QUOTE=cass2376]Hi all! I had my first cysto&hydro

Hello Cassandra, I remember my first time I had a cysto/hdro done, I to was so misrable for almost two weeks I got worser than I orignally was.. But now after 15 or 18 don't remember I will beg for them cause after I always feel some better. I used to do very well with them and would go months with not as much pain as I am in now..But my doctor will only do two a year. I do hope that you are feeling better now and hopefully in a week or so you will be doing even better with this and it will be somethign that will help u.

Hugs to you
Linda:toilet:

[Briza]

Cassandra
I'm sorry you are suffering so much. I also had a lot severe pain after this procedure and I also had the urine retention problems you are describing and my stomach blew up like I was 6 months pregnant. Please see your dr as soon as possible...having to force to pee and if little is coming out could lead to further complications like I had that resulted in a week's hospital stay. I'm not trying to scare you, but it would be wise to see your dr on Monday if possible, they can do a sonogram or ultrasound, I can't remember which) of your bladder to see how much you are retaining. I also could not get into or out of bed, or on or off the couch. I either laid on the bathroom floor or sat at a the kitchen table with my head on table but could never sleep the pain was so bad, and I did have pain meds. If your symptoms are like mine or get worse, if you are retaining so much that your stomach is bloated, please go to the ER today so they can cath you. My prayers are with that you feel better soon. Please keep us posted. You can pm me if you need to talk more about the symptoms you are having. :grouphug:
PS one thing that did help me to pee and make it tiny bit less painful was to fill a sitz bath with warm water and try to pee in it. If you don't have a sitz bath, then you could also fill tub with warm water.

[mare mare]

Cassandra,
I hope you are feeling a little better today! I had to take my pain meds every 4 to 6 hours. I also was given Urised. I said I would never go through that again! It felt like I was peeing razor blades for 3 days after! I couldn't stay off the toilet for 3 days! If you are still retaining your urine, maybe you should be looked at.
Hang in there!
It gets better!
Hugs, Marilyn

[donnadb40]

Had my last one done about 5 weeks ago and am still in pain daily! Can't take pain meds cause it makes me have bladder spasms. Try using a heating pad or if you can gain access to a TENS unit, that really helps me alot! The urinary retention is a bit disturbing and you should probably call your doc in the morning! Hope you feel better very soon!

[irishnan3]

Here it is 4:30 in the AM and I typing because I can't sleep from the pain. I had my cysto/hydro and Bladder Biopsy on the 16th and it went well. Had some pain afterwards, but Uro kept me in the hospital a lot longer then most people have posted. He also kept a folly in me till I was released on the 18th. I think that's what kept the pain at bay. BUT, here I am 6 days later not able to do much of anything. Standing and walking are really hard. What's up with this??? Thank God my Uro is a good guy. He gave me Vicodine for the pain 7.5 He is the only one that actually will give me something strong enough to touch the pain. My 1st uro wouldn't give me anything at all...
I am praying that this is a phase and it to shall pass. It seems strange to feel worse now then I did when I first came home. The not sleeping is killing me.:cussing: What a horrid condition for the rest of our lives.

[ICNDonna]

Patty: Any time we have an increase in symptoms after several days of feeling better, it's possible that there's an infection developing. I think it would be a good idea to have that checked today.

Donna

[irishnan3]

Thanks Donna: I was wondering that?? I'm having a lot of pain on the left side especially. I will give the dr. a call. I don't want to be caught tomorrow and not be able to reach anyone.

[ihurttoo]

I definately agree with Donna that there could be an infection! Please get this checked out ASAP! I hope that you start feeling better soon. Hugs, Amy

[mary124]

I agree with the others! I would call the doctors to see if you had an infection, maybe with it being a holiday weekend, he/she can call you something in without you having to go in? (I know sometimes my doctors will on occassions). Feel better.

[sami4]

This is exactly why I refuse to have a Cysto-Hydro. I dont think it adds a thing to the treatment plan, puts people through a lot of pain and suffering and for a routine IC diagnosis is unecessary. I was diagnosed with the potassium test with a rescue instillation after, I take the same meds as you all and have had very good results. There is a big move in insurance companys to not pay for this, but will pay for potassium test.
I know Donna swears by them, but I think she is a minority. Common sense tells me that to stretch a fragile bladder until it bleeds is not helpful.
Sammie

[lindagjanssen]

Here it is 4:30 in the AM and I typing because I can't sleep from the pain. I had my cysto/hydro and Bladder Biopsy on the 16th and it went well. Had some pain afterwards, but Uro kept me in the hospital a lot longer then most people have posted. He also kept a folly in me till I was released on the 18th. I think that's what kept the pain at bay. BUT, here I am 6 days later not able to do much of anything. Standing and walking are really hard. What's up with this??? Thank God my Uro is a good guy. He gave me Vicodine for the pain 7.5 He is the only one that actually will give me something strong enough to touch the pain. My 1st uro wouldn't give me anything at all...
I am praying that this is a phase and it to shall pass. It seems strange to feel worse now then I did when I first came home. The not sleeping is killing me.:cussing: What a horrid condition for the rest of our lives.


Irishnan, I hope you are feeling some better today as it is thanksgiving. I been there alot of times and wondered myself is it worth it, but in the end for me it was. No one should have to spend the day in pain as this seems to be the only things I look forward to anymore my family times. I'm thankful today I have very little pain for a change. Its been a rough three weeks since my Inter Stem.
:woohoo: I wish for pain free day for everyone here and a blessed Happy thanksgiving... Bring the turkey on...:woohoo:
Linda

[Ashelliak]

I hope you feel better Cassandra! It veries from person to person for recovery time. I hope you heal soon! Have a happy Thanksgiving! Keep us posted on how you are doing. It should feel better soon hon. Take care!

[mich2604]

Hang in there! You can search for my post on here and my experience.

I was held overnite because i was bleeding too much to go home..........so wide awake in a ton of pain back went the foley..........i screamed and yelled....as i found out later that was due to the fact that i had swelling and iritation at the bladder neck. My bladder was flushed overnite and the tubes to the urine container strapped to my leg.

I was in a lot of pain, mostly the urethra from the procedure and cath. I was given percacent every few hours.

The next day I could not walk, i was so beyond stiff in the pelvic area....i couldnt feel myself pee at all...it was scary stuff. My uro sent me home with lidocaine gel....which is great stuff, i couldnt pee without it.


It took my urethra about 2 months to fully heal....it felt like it was stretched and cut up, i swear i thought i would be like that for life.

I also had bladder pain, in the bladder area which i never had pre hydro....that has somewhat gone away now....but i get it during flare ups.

Overall i do think that the hydro did help with some of my pain.

Oh and i was also put on cipro for a week after this to ward off infections.


Many hugs and wishes for good healing.

[Babs RN]

I like Donna have had success with cysto/hydros. As my disease has progressed(which is rare as IC is rarely a progressive illness)my relief time has decreased but I still get at least 4-6 months of baseline pain reduction.

Hugs and get well wishes,
Barb:hi:

[marsi4]

I had one done two months ago and it didn't help. I do agree that it's common sense that stretching, bruising tearing and bleeding an already damaged bladder can't be helpful or considered a form of treatment. My new uro doesn't do them because he doesn't think they help. I just wish that they would find some better treatments that will work that are less painful and effective and don't hurt the bladder more than it already is. I had a lot of bleeding and my urethra was burning and killing me after the fact for two days . I will never have another one done except for surgery purposes to evaluate the condition of my bladder. If anyone is considering having it done make sure that your uro is willing to give you something for the pain. Any uro that does this procedure and doesn't prescribe pain meds should not be doing the procedure in the first place. What are they thinking?

Marsi4

[irishnan3]

Hi Eveyone: I'm back, Boy Donna you hit it on the head with the Infection. I called the Dr. after your post and he started me on Microbid 2x's a day. I started running a fever of 101' kicked my butt. Still won't go under 99.9 but I still have a few days of meds. left. My pain levels have subsided a bit, almost afraid to say it, don't want to jinx myself. lol !! So all in all I think the cysto/Hyro could be a sucess for me. My bladder biopsy showed the IC of course but the dr. said there were no Ulcers. Thank God! I can only say I pray and pray for all of you who do have Severe IC, because the pain I feel without ulcer's is unbearable at times I don't know how you get through it. I also would not know what to do without this site. It is the only place I feel like I can vent and everyone really listens. Thanks to all!!!

ps has anyone ever done the Angel program for the Holidays??? Please Let me know what you think.

[Feismom]

I know the first time I had the Hydro done was over 10 yrs ago. I was in pain, etc but it did go away after a week. I also developed a bladder infection (which I was told could happen) and once I got on the antibiotics my pain went away.

After going thru all the med protocol for IC with no success I now have the Hydro done every 6 months. The Veterans Administration Hosp has been awesome to me. The Urologists are top notch. I always have to spend the night because I drive 110 miles one way for the outpatient surgery. No family or friends to drive me. Because I've had problems with infections I'm sent home with antibiotics to take for 3 days only. The pain is awful the 1st day and gradually subsides.

When I had my last one in June they decided on keeping a foley in and flushing the bladder with "water" for 12 hrs. I found that to be more painful then anything. Hence the reason you're knocked out for a Hydro... PAIN So, hopefull they won't go that route when I have it done next week. Apparently I have a bladder infection and they put me on antibiotics before the surgery. They asked me if I had any symptons of a cystitis & I said with IC you feel like that all the time. I never can tell when I really have an infection.

After the next Hydro the next course of treatment is going to be Interstim Therapy. They'll be doing the test run in Feb to see if it will help. Thank heavens for this forum I've gotten some great pros and cons on the procedure. I'm at the point where I'm sick and tired of the hydro being done every 6 months and having it gradually wear off by the 4th month. Then I have to wait another 2 months before getting any help.

So, hang in there... I would definately be checked for an infection... I knew something was horribly wrong with my urine turned to a DARK CHOCOLATE reddish brown & THICK... They had to do a flush in the emergency room which was extremely painful. They had to keep flushing until the blood ran clear. I then was kept overnight with an IV and a very strong antibiotic. Then sent home with antibiotics. I've had that problem 3 times in the past 10 yrs. So, when I had a "weird" pain and the bleeding changes color then I know that I have to see my doctor ASAP.

[Briza]

She started this thread. Wondering how things worked out???:angel:

[cass2376]

I am not doing too good still but it is late and I am going to try to get some sleep. I will post back here tomarro. Thank you all soooooooo much for your concerns and help. I will be back here tomarro.
Take care and God bless, Cassandra:angel:
P.s. I will give all the details later.:)