Good news

Hi my IC friends!! I have been doing exceptionally well with my pouch now since the surgery.  It has been almost 2 years since my surgery (I think).  Lol!!!  Anyway I still get occasional kidney pain and a rash around the stoma every now and then.  I use athlete's powder for the rash. It sounds crazy but it is for fungal infections.  Since it gets really hot here in Alabama I get some moisture under the wafer from time to time and that can lead to a yeast infection or fungal infection under the wafer.  Then it is really hard to make the wafer stay on.  I have to use a moldable ring under the wafer to make it stay on.  It can get very itchy sometimes.

On another note........... My son just got married to a beautiful girl!!! We just love her!! He is very happy so that makes me very happy.  We'll I have to go now but I will not take as long putting a post up next time!!  Have a lovely weekend!!  xxoo ~Kristi

8 months since my bladder removal (Cystectomy)

Well, I have been hospitalized several times since my surgery.  I start having pain in my kidneys.  It is excruciating pain.  I will say that I am still happy that I made the choice to have my bladder removed.  Now it is like second nature to me.  I have become very comfortable will using a pouch to collect my urine.

If you or someone you know is considering having this done then please let them know that I am willing to talk to you/them and answer any questions. I think that I will do a video of how I take care of my stoma.  Everyone who has a stoma gives it a name.  Mine is called Tess!  I will explain where that name came from on another post!  

My door is always open to my friends!

"Hello Everyone, I am back"

Since I last posted I have been hospitalized 3 times.  I am doing better now.  I had a kidney infection the first two times.  The last two times I had severe kidney pain.  The doctors had many tests run and the outcome is "enlarged kidney."  That is all they came up with.  I was in excruciating pain.  I have been put on a low dose of Macrobid (antibiotic) to be taken every other day.  I really hope this helps.  So far so good.  I have learned some things during my doctor visits and hospital stays.  If you need to give a sample of urine and you have a urostomy then the urine needs to come directly from the stoma.  The night drainage bag that is used when you sleep is DISPOSABLE and insurance will pay for you to get 2 per month.  I didn't know that the drainage bag was to be thrown away after 2 weeks.  I don't know if that makes me naive about it but I really didn't know.

Does all of this make me sorry that I had the bladder removal?  NO, not at all.  The IC pain that I endured everyday is gone.  I do still have some phantom pain from time to time and it can be aggravating but that is just part of it.  It does take some time adjusting to the way you now see yourself.  I am talking about physically and mentally.  You have to be strong.  Know that what you did is totally worth it and you still have your life.  You should look at yourself as being blessed.  At least you are not dealing with a life threatening illness.  I know it can be very hard because of the pain of IC.  If you are struggling with IC and you are contemplating having your bladder removed (Radical Cystectomy) then research, research, research.  Get the facts and know that once  you do this there is no going back.  I am very glad that I did a lot of research first and so I knew what I was getting into.  I couldn't be happier with the outcome of my surgery.  I just need my kidney to stop rebelling.  It will just take a little time for my body to realize that my bladder is gone and now there is a new outlet for my urine.  If you have any questions just ask me. I will be glad to answer you.  I deal with depression and that is normal.  When you have been through as much as I have then you have to realize that depression is going to hit you.  I have re-occuring depression.  That just means that my depression comes and goes.  However, I live with a certain level of depression everyday.  It is understandable in my situation.  I am a Christian so I have FAITH.  If you have faith, love and mercy then I believe you have everything you need. God is number one in my life and I am so fortunate to know him.  I encourage you to seek God's help through prayer.  Prayer is what I ask for whenever anyone ask if there is anything they can do for me.  I wouldn't be the person I am today without my faith in the Lord.  If you are not a Christian please realize that I am not trying to be pushy but that I care about what happens to you.

I am so glad that you have read my update and hope that you will keep following my story.  Life is short "LIVE IT".

picture of my beautiful daughter

Almost 1 month since surgery

I will admit that this surgery has been a tough one.  The phantom pains are getting to be more constant now.  The only thing that helps is getting into a hot bath.  I have a really big tub with jets and air that comes up from the bottom and makes waves and bubbles.  I am really spoiled with having such a great tub.  When we built our house I got to pick the tub out.  I better enjoy it while I can because it sits up high and you have to go up 2 steps and then climb into it.  When I get older I know I won't be able to get in it.

My sweet little dog was stung by a wasp today.  She was pitiful.  I gave her children's benadryl and rubbed an antibiotic on the sting.  I swatted the wasp away and pulled the stinger out.  I heard her yelp and start limping and then I saw the little savage hanging onto the back of her leg.  My poor little baby has been sleeping all day because the benadryl knocked her out. Off I go now.............................................

2 weeks and 2 days after Radical Cystectomy

I am doing really good.  The phantom pain is letting up.  I have not had any Interstitial Cystitis pain!!!  I know that I picked the right path for me.  I had prayed the night before I decided what to do that He would give me an answer as to whether I should have the surgery or not.  I woke up the next morning and knew that bladder removal was the answer. I never even second guess myself.  God can be very powerful and I know that he gave me the discernment to make a decision.  I went to see Taken 2 last night and it was really good.  I enjoyed sitting there eating popcorn and drinking coke.  I never could drink anything with carbonation before my surgery because it would irritate my bladder.  It is so nice to be able to drink Ice tea again too.  Ice tea use to irritate my bladder too. I know that I will find foods and drinks that I have really missed because of IC.   Time for me to go to bed. Goodnight all!!!

phantom pain after RC

Hi everyone, Today is almost 2 weeks since my surgery.  In just 2 more days it will be 2 weeks.  That just doesn't sound right to me.  It has gone by so quickly.  My recovery has gone well.  I did sleep a lot at first. I am having a tough time with my pouches.  I don't like the one piece but it seems to stick the best but also seems to be really bad about eventually leaking.  Later on today I am gonna get my shower and take off the bag.  I think I will just leave it off for a while so the skin can breathe.

I am having phantom pains. Today has been the worst.  I am ok right now but earlier I was having really bad phantom pain.  I want my pain to be gone!! That was the whole purpose of having a Radical Cystectomy.  I just want to ask for yours prayers that this phantom pain will stop.  I really just want to have a normal life. As normal as it can be.  I know that having an external pouch and no bladder changes who I am. But not in my heart.  I am still the same person and I don't feel different than the person next to me who does still have a bladder.  I just want to pain to go away.  I am really getting tired of fighting it.  LEAVE ME ALONE PAIN!!!!!  I want to enjoy my life without pain.  Right now in this very moment I feel great.  I just want it to stay that way.

Thank you to everyone who reads my blog.  I know you might not read what you would like my blog to say but this is life and I have to accept it as it is.  I can ask for prayers and pray myself for the phantom pain to go away and that is all I want at this point. I love my IC friends and I pray for you everyday!!!!

My Story of bladder and urethra removal

You will need to start where the title is September 26 and scroll upward.  Thank you all for being so patient to allow me some time to get this put on my blog.

Monday, October 1st 2012 HOME

The Ostomy nurse that I had to see about a week before my surgery came by.  She brought me a few pouch's and allowed me to change this one myself.  I think I did pretty good with my first pouch.  For breakfast I had the same thing every morning- cream of wheat, vanillia pudding and other stuff that I didn't want.  I really didn't like the pudding very much. I can't complain about the ice cream for lunch and dinner  because at least I know it came frozen and not from the hospital's cafeteria.  After the Ostomy  nurse came by I was told that I could check out.  One of the doctors in with my doctor came by and actually asked me what pain medication I wanted to take at home.  I had been on Dillaudid so I asked for it and he was fine with it.  Then came the paperwork to sign myself out of the hospital.  I felt pretty good considering I just had major surgery for the 2nd time in 3 months.  So that is my story so far.  At least until I got home.  I will add to this blog maybe tomorrow to catch everyone up.

September 29th post-op

I woke up on this morning to a wet bed.  My bag leaked again.  I was getting a little bit frustrated and thoughts were going through my mind such as; I hope I have done the right thing and OMG this is done and it is for the rest of my life.  I just kept thinking about the fact that I no longer had a bladder.  I thought that I was mentally prepared with this but I still had some issues about it.  I don't  care how mentally prepared a person thinks they are, they arn't!!  I am at peace with my decision but it makes me think  of certain people who I have talked with that one day say they want to do this and then the next day they don't want to or they want to have the inside pouch made but maybe they want the external pouch like I got. That person is not ready!! So if you know someone like that and they go ahead and schedule the surgery then you need to try to stop them until they have really thought about it and this has been something they just know that they want.  I had a male nurse who came in and changed out my leaking pouch.  He did the best job with it.  It didn't leak at all that night/or did it?
SEPTEMBER 30

  Well, I woke up again in a mess of wetness.  It was cold in the room so I was just shivering.  After getting cleaned up and getting my bed clean again the nurse came to look at the pouch he had put on.  We could not find a leak in the pouch.  We simply could not figure out where the wetness came from and we never did.  All I did today was watch some tv and sleep on and off.  I read some too.  That reminds me, I left my people magazine and my Reader's Digest in a drawer of the table I was using.  Darn!! I wasn't finished with them. Oh, Well!!  I got up and walked a couple of times.  I have had some lower back pain on this day.  They decided to change up my medicine.  They gave me Dilludid every 6 hours and Percoset every 2 hours. I remember that I was so ready to be at home and in my own bed.

September 28th

Finally I can have some water and they start me on soft foods.  I had cream of wheat, vanillia pudding and some other stuff but I didn't eat it.  They asked me what I wanted to have first and I told them a Dr. Pepper because I had not been able to drink one in years because of my  bladder.  So I got one. It was sooo good. I didn't have any really horrible pain.  I was on a drip with Dillaudid in it.  That is a mighty powerful drug.  Our preacher Brother Warren came to the hospital to see me.  That was really nice of him.  My dad came to see me and brought me 1 dozen pink roses.  They were beautiful.  In between these times I had my first pouch to start leaking.  They had a young PCT to change the bag out.  She didn't do it right so they called for an Ostomy nurse to come change it. For lunch they brought me Cream of chicken soup, chocolate ice cream, orange sherbert ice cream and sweet tea.  I didn't eat the cream of chicken- YUCK!!!  Then for dinner the same thing.

Day of surgery-Post-OP September 26

I wake up after surgery and I don't even know I am awake. Everything has gone great according to the doctor.  A really sweet lady came to see me that lives in Birmingham and has had this same surgery.  I feel really terrible now because I don't remember I word I said to her or anyone that day.  After drifting in and out of consciousness I finally wake up and know that I am awake.  I don't remember the time.  That is when I asked "who brought the pretty daisies?"  My husband said "the lady that came to see you."  Then my response "what lady?"  His response "you know the nice lady from Birmingham that was asked to come visit you because she had the same surgery."  My response "I don't remember."  (they must have put something mighty powerful in my IV for me not to remember someone coming to see me. 
SEPTEMBER 27th

The next day my mom came to Birmingham to stay with me in the hospital.  The doctor had put a tube down my throat and up my nose.  All night my mom fought with me about keeping the tube in.  I remember that my nose was itching really bad and I was trying to sleep but even when I was asleep my mom would see my hand go straight for my nose.  If I pull this thing out then the doctor said that I can't have any water until I go number 2. (lovely, huh?).  My mom told one of the nurses and so she taped the nose thing down to my face to try and keep me from pulling it out.  My mom started drifting off to sleep and right before she could she saw my hand going to my nose and she couldn't grab my hand in time.  She turned on the lights and she later told me that I had the entire thing pulled out and my arm was straight up in the air holding this thing.  I barely remember her yelling "NO, DON"T DO IT) End of 2nd day

ok, here we go DAY of surgery-September 26

I didn't sleep at all the night before. After not having anything to eat for 2 days I started getting nauseated. I couldn't finish all of the Golytly stuff either. I had about 3 good swallows left but I just could not drink anymore. Then at 12 midnight I couldn't have anything to drink either. By 1:00 am (day of surgery) I was in so much pain. It was hunger pains and nausea. I felt as if I were starving. I called my friend who happens to be an Ostomy Nurse. She answered and told me that we should go ahead and leave because I had to be there by 5:00 am and we are 2 hours away from Birmingham, Al. We grabbed everything and made the drive there. I was dry heaving all the way up there. Not constantly but enough!!I was cold and at this point I really didn't care what I looked like as I walked into the hospital with my Christmas blanket wrapped around me. haha!! I can look back and laugh at myself for that one. The lady at the admissions desk could see just how sick I was so she took my chart back as soon as we gave her my ID. It was 4:30 am. We were then given a buzzer like the ones they issue at restaurants. I sure would have ordered a big mac if I could. I was sooo hungry. Finally 5:00am our buzzer went off. My husband and I then went back to where I had a bed and a nice change of clothes. What I call the peek-a-boo look. Great fashion statement!! Oh, and I can't leave out the beautiful bright yellow skidd proof socks so that you don't fall down. It is not Like I would be getting up anytime soon anyway. But rules are rules. 6:00 am rolls around and I am still begging for some anti-nausea medication but the nurse had to come put in my IV. 6:30 am. and finally anti-nausea medication and the I don't care what happens next medication. Well that is all she wrote for the first part of the day until I woke up.

2 days pre-op

I am so excited that I have more members now!!! Yay!! I will have to say that having to drink Magnesium Citrate 250 ml and then an enema is horrific!!!! I am not gonna lie. I have to drink the Magnesium citrate again at 6:00. Tomorrow I have to start all over again plus take 2 different antibiotics. My surgery is actually called Radical cystectomy. I am soooo nervous or I guess a better word would be anxious!! I will share my adventure with you every step of the way. I may be to drugged up the first day. My son is in college studying to be a nurse. He also, already works at a Hospital in the ER. A little old lady pushed the buzzer because she had just gone to toilet and wanted Jay to take her to her room. But, she said to him "I want to show you something". He told her that he is not a nurse yet and not a doctor. She said "oh, well I really want you to see something," She then pulls out her (I can't think of what it is called) pee bucket and said "do you see that?" He said "see what." She said "right there." He said "I see an indention in the toilet paper that in there." She said "well do you see the head and the tail?" He said "I guess I can kinda see what your talking about." Then (here it comes) she said "it looks like a tadpole." So she thought she peed out a tadpole. Poor little old lady. He was about to crack up laughing but of course he didn't. But that is my funny for the day. I loved that story.

Results of Poll so far

External bag