Random Thoughts

Here is a nice pic of my back with the bandage off so you can see how small the hole is for the leads after my Stage One surgery for InterStim.

This did not hurt real bad until the day before stage 2 surgery so it was about 5-6 days later.  It would hurt when I bent over as I could feel it pull but if I did not sleep on my back or bend over we were good.

I could NOT sit in a car comfortably at all, let alone even drive.  I had to sit on my right side and it was only comfortable for about 5 minutes.

The day before my stage 2 surgery I took a shower, which was long over due, and the bandage on the back got wet and to avoid infection I had to change the bandage.  This is what made it hurt.  the white plastic thing you see on the lead just kept pushing into my back and we could not figure out how the doctor had it taped in the first place.  Needless to say I was rather uncomfortable but was happy I only had to deal with it in the morning.

This was WEIRD though.  As my husband took the bandage off after my shower everything was fine and I was standing just fine while he took the picture and redressed it until about 5 minutes or so after he had started.  All of a sudden I got light headed and dizzy, felt like I was going to puke and faint.  I collapsed to my knees and knelt there with my head on the toilet.  I had no control and could not figure out what the heck was going on. 

He finished changing the dressing and I literally laid on the bathroom floor for about 10-15 minutes until it passed.  I usually have a strong stomach, and I did not even see my back at this point so I am really at a loss as to why I almost fainted.  Weird.

Now it is Day 1 after stage 2 InterStim.  I will make a new post about that tomorrow!

So I had my stage 2 of interStim surgery yesterday and it has been 8 days since I have been able to work out.  I feel bloated and I am NOT going to do measurements until the end of January at this rate as I won’t be able to work out for a couple more weeks and I know that it will just depress me as I really feel fat this week.

I can’t work out yet so I sent my husband outside to play with my daughter after the first snow of the season for us here in Ohio and it did make me feel better to see them having so much fun.  My husband does not work out nearly enough so I was not feeling too bad, this was good for him!  Check out how awesome our backyard is, they are having fun and so is the dog!  Much needed for all!

They were outside for just over an hour.

It has been a few days since I posted as I have been up and down with surgery to be totally honest.  It was not working so well at first.  I was not sure for the first couple days but the OAB and leaking was just not letting up and I was getting very frustrated.

I went to the doctor on Friday, 2 days ago, and he said “turn it up as much as you need too.”  I thought, “OK I can do that.”  “I was hesitant on turning the power up on the battery pack myself as I just was not sure how high was enough.

The rep that is in charge of monitoring my battery pack calls me almost every day and I told him on Thursday it was not working well and he did not call me back again til Friday.  He forgot to call me back Thursday but at least he did not Friday, so that is good.  He had me change some settings on the back panel, we had to do it twice on Friday.  The second time seemed to be the right adjustment.  I could feel it as soon as we adjusted it but it was/is not painful.  In fact I can’t feel it at all now and I have actually turned it up myself a bit more to get better results.

Since Friday evening it has been working a ton better.  I would say that I have hit the 50% better mark for the whole process.  They tell you that if the device works, even 50% better, from your normal bladder issues then they consider it a success.  That may not sound like much but when you have issues like I do, 50% can feel pretty darn good.

There are still some small issues but I am still playing with the adjustments and will hopefully have it down to a science come Tuesday.  If I am not 100% satisfied by Monday then we will postpone step 2 for another week so I can be sure.  Right now step 2 is scheduled for Tuesday Dec 7, 2010.  right now I am feeling more confident it will happen but 2 days ago I was not so we will see.

Just a note:  If you are considering this make sure you believe everyone that says, DO NOT drive with it.  Oh boy that was a joke.  I drove myself to the doctor on Friday and had 3 kids in the car and I had to sit sideways.  Good thing I am only 1 block away from my doctor!  Won’t do that again with the external pack, my hip was sore!

I woke up so sick to my stomach to day and with one of the worst leg cramp in the world.  I could barely walk, my calf muscle was in one huge knot.  I unplugged my InterStim for a few minutes while I walked around and this helped alleviate the pain in the leg.

I am not sure if the upset stomach and pukey feeling I was experiencing are/were related at all as they did not subside when I unplugged the battery pack.

I only had it unplugged for about 10 minutes and plugged it back in and my leg has felt fine.  As far as it working well or not, well this morning not so much.  Still experiencing my normal over active symptoms and a little leakage.  The last hour or so have been better so not sure where this is going quite yet.  I do have to say that I am already tired of carrying this thing around!

OK so I need to take this positive thinking to a new level this week.  I had surgery done yesterday (more details on my other blog) here http://btrbb.blogspot.com/2010/11/sacral-nerve-stimulation-interstim.html

There is between a 73-83% chance that this will work.  73% from everyone else and the 83% comes from the company that manufactures the battery pack for the InterStim so I tend to lead towards 73%.  However, leaning that way goes against everything I stand for on this blog and in my change of mind.  I NEED this to work, I WANT this to work.  It is a big test for me this week.  I can’t think negatively about it because that will be a huge mistake.

I am telling the universe today that this procedure is what I need right now and will work for me.  It will change my life permanently and give me some of my life back.  I will be in the 73% because I need to be in the 73% and its about time!

I am having to take a break in my exercise for the next few weeks due to surgeries.  My surgery is being blogged about on my other blog http://btrbb.blogspot.com/2010/11/sacral-nerve-stimulation-interstim.html this link is the first post about it.

Anyway, I am still trying to eat healthy and limit my amounts since I will be burning a lot less energy but it is hard.  Has anyone experienced excess hunger after going under anesthesia?  For some reason, since late last night (I just had the surgery yesterday) I am starving!  I want to eat everything!  I am trying not to but my stomach keeps growling at me and it makes me restless.  Glad I only have healthy food in the house or I would be in big trouble.

OK now to my point, coffee or no coffee, that is the question?  I think I need to give it up.  For one it is a diuretic and it makes me pee all the time and it is frustrating.  I am not addicted to it, I just like the taste.  I can go, and have, for days not drinking it and I don’t withdrawal so why do I drink it?  I think I need to stop drinking it, it really is not that great for you anyway.

I have about half a small carton of Folgers left and I think I will finish it and be done.  Maybe 5-6 days worth.  I don’t think I am going to buy anymore and get rid of the coffee pot and see where that takes me.  Should take me to somewhere good!

I am rather sore today and it feels really weird to have this tube hanging on the outside of my body and the battery pack is rather large and heavy and falls off my pants all the time.  I think that companies forget that women to don’t wear the same type of pants as men and the batter cannot be clipped on them as well.  Another issue is that I can’t wear anything but soft stretchy pants or it hurts real bad so that makes the size of the external battery even worse.

Here are some lovely pics of the back of my hip and the battery pack.

The next few weeks you will get to go through my journey of “InterStim” or Sacral Nerve Stimulation surgery.

I have had bladder issues my whole life and this use to be embarrassing for me to talk about I no longer feel embarrassed and want to lead you through my journey so others have a chance to maybe have some questions answered.

Background:

I basically wet the bed until I was 12 years old.  Did it once at my friends house at age 11 and that was horrifying.  I went through suppositories, drugs, you name it, nothing worked.  I eventually learned to get up 1-3 times a night to not let this happen.

I have always had trouble with incontinence, and after I had kids it head about 10 fold.  I have always had an over active bladder as well, even when I was young I would go to the bathroom it least once an hour, sometimes more. 

Now that I have had kids, if I drink anything at all I go every 15-20 minutes.  Some days it is in large amounts each time and others, I just feel like it is a lot but when I go it is not so much.

If I jump around and dance I pretty much wet myself on the spot.

I wear pads around the clock but this can be very uncomfortable as when I wear it for too many days in a row it makes me sore and that does not go away quickly.

It has been an uphill climb and tiring living like this.

What I have done so far:
I have been in and out of the doctor for years and the last year I have been on every over active bladder on the market.  The last one (Enablex 15mg) is costing me $40 per month as there is no generic version, and that is with insurance coverage!

It has helped with the incontinence drastically but not at all with the overactive bladder.  The smaller dose between 5mg-10mg of other medications did not help at all and there are too many to mention that I have tried.

The last resort for my doctor is this InterStim surgery and it is in 2 parts.  We are proceeding with this at 6am tomorrow morning.

Part 1: 
Hook up the leads near my sacral nerve (near the tailbone).  They will then attach a wire to the lead and this wire will then exit out of my lower back (maybe upper buttock).  I will go home like this (with the wire sticking out) and the battery pack hooked up to the outside of my body.  This allows electrical impulses to the sacral nerve in hope that the nerve and brain will start communicating properly and thus limit the times I have to use the bathroom

This part kind of makes me a bit uneasy.  I don’t really want this wire and battery pack on the outside of my body for a week, but I guess  won’t know until I try.

Part 2:
Only if part 1 is successful, will we do part 2.  If no success (not 50% better then before) then we just take it out on part 2.  If there is at least a 50% improvement then we do the actual step 2 which is inserting the battery pack underneath my skin.

It is at this stage that I will have a “bladder pacemaker” to show off.

Both steps are done in outpatient surgery but require me to be put out totally.   I am sure there will be tenderness and soreness, but will not know exactly how much until tomorrow and the next few weeks.

Will keep you posted!