Cysto\Hydro 2/23

[MsSmiley]

I went to see my uro 2/16. He sent me to the hospital for blood work & I go in for a cysto/hydro 2/23 & to his office for at least 2 months starting the following week for the bladder instillation. He is putting me on Elmiron also. I am so far a little scared but for some odd reason at ease, so to speak. I guess to me since I had a colonoscopy in March 2003 then a kidney stone that followed the next day & surgery for it 2 weeks later, that this procedure is kinda like a colonoscopy by being put under & scoped,.....But coming Monday might be a diff story.
I haven't been on here much from exhaustion but thought I would come & see how people reacted to the procedures. I am trying to get an idea of what I can tell my manager about approx how many days I possibly could miss. But now that I read everyone's posts I guess there is no answer b/c everyone is diff after the procedure just like everyone's IC symptoms. I have talked to my manager about me having to go to the uro the 16th, but he went home sick Tues, which was my day back after 2 days off, so I didn't get to talk to him about what the uro said & the procedures. He is being very understanding & working with me & is wanting to know what to expect with me working. I have talked to him about being afraid I am going to be fired for missing so many days (almost a total month missed altogether) since I started working, which was almost 5 months ago. So together we are trying to figure out what I can do about working. And after I find out it is definate I have IC I guess we will go from there. So at least my manager is willing to work with me if that's possible.

Anyway just wanted to update everyone on what is going on with me. Everyone has been so supportive & caring. Couldn't ask for a better way to be going thru something that everyone else knows what you are going thru & that can be so very helpful with everything.

I will let ya'all know what I find out.

Marlene

[ICNDonna]

I just home the hydrodistention works as well for you as it does for me.

Sending a gentle hug,
Donna

[Iris]

Hello Marlene, and will be thinking about you, hope everything goes well for you, hugs Iris.

[ICchell]

Hello Marlene,
I am new here also.Just had my 1st Cystoscopy done Tuesday.I am now going for my 1st Hydrodistention on 2/23 and I am so scared!!

Geez,you sure are going through alot all at once!
Having the Colonoscopy, kidney stone,cysto,hydro, and now possibly being fired!!!!!
I hope everything goes well for you on the 23rd.Hopefully your boss will work it all out with you and not fire you!
Please let me know how you make out !God Bless You!!!
michelle

[marsha24]

I had hydro/cysto, my urethra stretched, and a D&C in September. I work in an office and went back to work in exactly 6 days. I was scared of the pain too, but it wasn't that bad. Also, had 7 weekly instillations 2 weeks after that, started Elmiron, Atarax, and Elavil. I did great for the next months except when I had my period (which was twice a month). Had a hysterectomy 2 weeks ago and have had alot more problems from my bladder(from being cathed during surgery and for the nite after) than when I had the hydro/cysto. In fact, I am having to start all over with bladder instillations tomorrow because of the horrid flare from this surgery. I know everyone is different but I wanted to let you know my experience so maybe it will make you feel a little better.

[MsSmiley]

Thank you everyone for your responses. Yeah the past year hasn't been too fun. I think most of my pain & all started after I had the kidney stone removal surgery b/c I had to have a stent for 10 days. My uro asked me about that but didn't say anymore. I have only had 1 UTI in my life that I remember but have always had pelvic pain since I can remember & it has just gotten worse since I had that stone removed. The colonoscopy I had to have b/c of family history of colon cancer & my brother got colon cancer a couple yrs ago at age 37 or 38 (I am 33 & the age for my family getting it is late 30's) & I kept putting it off b/c of my fears of the results. My oncologists wants me to have a gentic test done so I don't have to have a colonoscopy every yr b/c at this point I am going to have to.

Thank you all for your support. I could not get to sleep yesterday morning so much running thru my mind. I ended up getting up to call my mom to let her know about the hydro scheduled then the hospital called about the procedure.

Michelle, I will be thinking about you the 23rd while I am at the hospital. I hope both of us feel so much better in the long run after this.

Donna, it is amazing how long you have been dealing with IC. Makes me feel better that you can still have a life with IC even tho not everything works for everyone & it may take time to find what works for each individual.

With the bladder instillations are you able to drive yourself home or do you need someone to be there for you? How do you usually feel afterwards? I drive over an hr to get to my uro but my mom lives about 20 min's from him. She is going with me along with my DH to the hospital the 23rd. I just found out yesterday she's had a cystoscopy.

I talked to my other manager last night & he said I can take a leave of absence if I need to so I won't lose my job or position. What a relief. I didn't think you could take such things until your 1 yr anniversary but.........

Ok I am long winded & need to get to bed. There's just so many questions...

Goodnight to everyone who are just getting up, lol I will talk to ya'all later.

Marlene

[ICchell]

Hi Marlene,
Thats Great that you can take a leave of absence and wont get fired!!

Like you dont have enough to worry about huh?
I have only had 1 UTI in my life, when I was pregnant with my 2nd daughter.

What were the results of your colonoscopy?Hopefully they were negative!
God Bless You and Best of Luck with everything!!
I will be thinking of you also on the 23/Monday!!
(((((((HUGS))))))))

[ICNDonna]

When I have a bladder instillation, I drive myself to my doctor's office and home again. I live about 45 minutes from his office --- and I usually do an errand or two while I'm in town.

I suggest you have someone to drive you for the first one so you will know how you react.

Sending an encouraging hug,
Donna

[MsSmiley]

My colonoscopy came back normal, thank God. The genetic tests my doctor wants me to get I'm not sure I could deal with the results. It's a scary thing to not know if I will be faced with colon cancer in my future but then if I have the genes for it then it will be a question of when will it hit me?! It's a test I really need to think thru & need to talk to my doctor about, which I haven't talked to him yet. He had just sent me a letter after my colonoscopy about a good idea to have the genetic testing & to call him to talk about it. I worry about it all the time not knowing & can only imagine if the tests came back with me having the genes how much more worrying I would do.

Donna, my mom usually goes with me when I have appt's like this so I guess I won't have to worry so much about driving except to get home from her house which she can always bring me on home & I can get my car later. She has been thru so much & so she is always there for us. She had colon polyps when she was around my age, had colon cancer in 1982 or around there & had to have an illiostomy, in 1986 she had liver cancer & was sent to Mayo clinic b/c she was ate up with cancer & when they sent her there she found out they sent her there to die. When she got there they redid all the tests & she was clean, not a trace of cancer in her. She asked how long she would have had to live & they said no more than 3 months. Before going to Mayo she lived her life like she was healthy as a horse believing she was healed & throwing up all the way to taking me & my twin sis to school a half hour away. 17 yrs later she is still going strong. She is my inspiration. Oh now I am all teary eyed.

Thanks for replying with all my questions.

grouphug

Marlene

[MsSmiley]

Everything went fine with the cysto/hydro. I don't know any of the results yet. I am getting ready to call my uro to set up my appt for next week. I don't have any pain except for some in my left kidney which is the one I always have kidney stones in & going to the bathroom even more now. Other than that I am doing great. My husband can't stand the smell of me at the moment tho', lol. He said go light some candles or something, so he lit some. roflmao. I had him go on to work today b/c he was going to take today off also b/c someone needed to be with me for 24 hrs, but if I need him I will call him.
The nurse was going to have me get up to go to the bathroom instead of using the bedpan, which I just kept under me since I kept going every few minutes, but she said I was still being too loopey to be up & just had me sit on the bed. But I was just being my normal self. heehee.

Thank you everyone for your thoughts wink

I will let ya'all know the results when I find out. I am going to go lay down for awhile. Talk to ya'all later. grouphug

Marlene

[ICNDonna]

Thanks for letting us know. I'm glad it went well for you.

grouphug
Donna

[ICchell]

Hi Marlene, hi
Im glad that The Cysto/Hydro went okay for you.
Just had mine done too same day(2/23).
Its weird,I also have some pain on my left side and I'm not sure why!
I've been peeing like crazy all day long today!!!! Are you bleeding?
Im bleeding a little ,which I know is normal.Today Ive been on my feet all day long and I did notice a few small clots. eek
Good luck at your follow up!
MMy follow up is on March 4 th When is yours?
Were you prescibed anything?
My URO gave me Macrobid and Detrol LA.
My mouth has been SOOOOOOOOOOOO dry all day. Im guessing its from this medicine???
Let me know how you make out after your follow up.
Michelle

[MsSmiley]

I go back March 1st to start instillations. He is going to put me on Elmiron, probably do that Monday. The nurse told me to take Tylenol for pain as needed.
I also have been peeing every few minutes with not much void. I was bleeding but it stopped a few hrs afterwards. I just have very cloudy pee now. I was laying down most of the day Tuesday. I thought about going back to work Wednesday, not sure yet, DH will probably tell me to wait another day. My mouth has been dry also & have been drinking tons of water.
DH called me a couple times from work to check up on me. He said he went to eat his salad at lunch that he took & it smelled like me (from the test) & about got sick & couldn't eat it, lol

Are you in any pain besides your left back-side? DH said it only took like 10 min's for the test & they beeped them to let them know I was in recovery & to go back for the consultation & I was in recovery for at least a 1/2 hr & they beeped him again to let them know they could come back.

I will let ya know how it goes Monday. Back to bed I go, it's a little after 3 am.

Marlene

[MsSmiley]

I go for my 4th out of 6 instill/DMSO tomorrow. I haven't really noticed much difference since starting treatments, maybe even a little more discomfort more often than before. DH is thinking it is a waste of money. At the uro last Monday I asked the nurse who does the procedure if I still have traces of blood in my urine b/c I always do & she told me over 50% of IC patients have some blood in their urine. Still learning about IC!

Since I'm not feeling too bad I went back to work March 9 instead of taking the 6+ weeks off. I had a flare last night a couple hrs after I got to work & my sister brought me home. She told the manager that last time I got this bad I ended up in the ER so as soon as this one hit I got to her & said take me home before I end up laying under the clothes rack again, instead of waiting & still trying to work so I wouldn't end up in the ER. When I got to her I sat or tried to sit on some cans of food crying, not b/c of the pain but b/c of the frustration of IC. I hadn't ate or drank anything before the flare, just like the other flare at work, so I don't know what is causing these huge, unbearable flares. Something was telling me a couple hrs before the flare hit that it was coming & I ignored it. It was weird & I can't explain it but I knew. Like I sensed it or something. I had a flare Feb 26th too & I think I had an IBS flare with that one & we were getting ready to go to parent/teacher conferences.

I am going to work until the end of June, if I make it that long, to pay off all these dr/hospital bills. My family needs me home more than me working & I am so exhausted from everything I sleep from the time I get home or my boys go to school at 7 am until 8 pm when I get up to get ready for work. My 9 yr old asked me one night this week when I got up when I was going to quit work so I can play with them again, just breaks my heart to hear that.

This is another book since I haven't been on here since my last post I had a lot on my mind. I am going to go to bed. I never did go when I got home from work at 12:30 a.m., although I was resting I didn't sleep.

I will talk to everyone later. Thanks for listening b/c I sure need an ear(s) right about now.

Marlene