InterStim Stage I Update!

Wow, talk about slacking huh? I am supposed to be telling my “journey” with the InterStim, but I haven’t written in over a week! To be honest, I haven’t even been online much lately. I’ve mostly been resting and relaxing. It wasn’t until yesterday that I went out for the first time since my surgery! Nick and I actually went grocery shopping…I never thought I would be so excited to go grocery shopping! But enough about that and onto the InterStim!

It is working SO well! I am SO happy I decided to go through with this procedure. I know I am only still on the trial period, but I am so happy I had this done, really it has given me a part of my life and freedom back! I had the implant done on July 9 so I am on week # 2. I am due to have the permanent implant this Friday, July 24. I am going to definitely go for it.

I am still in a lot of pain from the incisions, I have to sleep on the sofa only, and I can’t share a bed with Nick. I have to have the pillows propped a specific way and have everything in a particular position in order to sleep comfortably. However, sleep all in itself has been a struggle. I find most nights I can’t fall asleep until 4 or 5 am and I only sleep about 4 or 5 hours at the most. That’s the majority of my sleeping right now. It is terrible, the doctor’s have given me sleeping medication too, but I find if I take that, I sleep TOO long, I took them one night, and slept until 3 in the afternoon! I also took it late at night, the doctor suggested I take it around 8 or 9 and when I get close to going back to work, I think I will do that to get me back on a healthy sleeping pattern. Alright, so that’s the sleeping part. To sum it up—not going well!

I am not allowed to change my dressings or anything, so I’m not allowed showering, it’s terrible. Sponge baths suck, and Nick is not very good at washing my hair, but he tries! I have to give him credit for that, and for putting up with my crankiness. I mean c’mon, after being cooped up inside my apartment ALL day, ALL alone, unable to do anything but sit here and watch crappy daytime television, when he gets home, I do tend to be a little moody. I have been taking my frustrations out on him, I admit that, but he’s been excellent and caring and supportive all the way through. We end up having a nice enjoyable evening once he’s home. Without being able to change the dressings, they are becoming SO itchy it is DRIVING ME CRAZY! The dressing is also getting very grungy and wearing and tearing, so we have had to improvise and fix the dressing up a bit. I can’t wait for the doctor to see our version of the dressing, ha-ha.

Okay, the InterStim part. I have had a Medtronics rep call and check in on me. He hasn’t called me everyday like they do for most patients because I’ve been such a “MVP patient” and I am very familiar and know what’s going on. So he told me to just call him day/night if I had any problems and I haven’t. I was a little nervous I pulled the wire a couple times and it may have moved, but it didn’t. I’ve had to adjust my settings now and then. It is kind of funny, some days I am perfectly fine on a particular setting, and other days I have to change it to a different setting. For the most part I have been on setting #2-3 and I stay on this setting most days. I have had to increase the setting on other days, I’m not sure why. The highest setting I have ever had to go up to is 5 and it is very rarely that I have had to do that.

Has it helped? Oh boy YES, YES, YES! It has helped me like you wouldn’t believe. Dr. Stoffel is my life saver right now! First, my urinary retention is GONE. In the beginning I was having to cath after voiding on my own. Now, I am COMPLETELY emptying my bladder on my own!! It is so wonderful! When I first started seeing Dr. Stoffel it was for frequency and urgency. I was going to the bathroom sometimes every 10-15 minutes at a time, around the clock every hour on the hour. Now, I am holding urine for 3-4 hours. For the most part, its 3-4 hours, but I have noticed sometimes I can hold it even longer! I think the longest I’ve gone during the day is 5-6 hours! It is like I have a new life now; I don’t have to worry about wondering where a bathroom is, or knowing where a bathroom is as soon as I go somewhere. One of the best parts…I am not getting up at night, and if I do get up at night it’s only once. I don’t remember the last time (before retention) that I was able to go through the night without having to get up every 2 seconds. As for the dysuria (pain upon urination) this is still not resolved, he said it may or may not get better. Well, I still have to take my Pyridium. I stopped taking it to see if I could go off of it, but I had terrible burning, and horrible, horrible pain with urination. Even with the Pyridium it is not 100% perfect, but it’s better than it has been in the past.

The IC pain…well Dr. Stoffel said the InterStim was not approved for relieving pain and IC “flare ups.” So I already knew this going into the surgery. It was still worth it. I have to say though; the IC “flare-ups” are less frequent than before the surgery. I am still having them, and it hurts, it’s bad, fellow “ICers” know what I am talking about. So I will say, while the flares have not changed in their severity, they have improved in their frequency. I’m not in constant IC flare pain 24/7. Pelvic pain…I have it still…I have a lot of pelvic pressure. That hasn’t improved in its entirety, but it doesn’t keep me bed bound like before.

All in all this has been a marvelous blessing I have had. I am so happy I decided to have the surgery, I know there have been a lot “horror” stories, and negative things about the InterStim, but I have also heard the positive stories, and I am blessed and happy to be able to say I *think* I am going to be one of those positive stories. I say think because I haven’t had the permanent placement yet. While it is similar and almost the same as the temporary device, it is still a little bit different and I just hope it works as well as the trial period has been!

I am excited/anxious and I am a little nervous about Friday’s surgery, but I think I am less nervous than I was for the trial surgery. Although there is one thing I have not come to terms with yet; I still haven’t processed it through my mind that there is going to be a foreign device inside of my body, something that will be in me forever, that I will be able to feel when I touch that area, I’ll be able to see it a little bit in my skin. I haven’t even given it any thought so I probably will be pondering over it the next couple of days. Cross your fingers for me, that all goes well!

I will definitely work on updating my blog better when I have the permanent placement. I will actually be able to change my dressings and show the incisions so others can get a real closer look and idea of what it is like.

One word of advice I have for people who are considering the trial, or getting ready to have the trial…definitely keep a VOIDING DIARY. I have been keeping a diary every single day every time I void, whether there has been pain or irritation etc… I have been trying to put in as much detail of the voiding as I can, it is something that has come in excellent handy information for me, plus dependent upon your urologist or surgeon…they may want to see it.

Well, this was a long one, but I guess that’s what I get for neglecting the blog for so long. I am due to have the surgery on Friday, depending on how I feel, we will see if I am able to update on Friday night at some point, if not, I will try to update it sometime over the weekend, with pictures and all.

I hope this has been of help to others going through what I am going through, and I hope I’ve given some comfort and relief to people considering their options of InterStim. It is true there are the good the bad and the ugly stories, but you have to make sure you read both sides. You have to make sure you have completely weighed your options and this is what you really want, and most importantly, you need to trust your surgeon. I have complete faith in my surgeon, and trust him and his team wholeheartedly. I am a firm believer that a lot of the surgical outcome has to do with the surgeon…having the right surgeon. I’ve done well in the department and I hope anybody who goes into the InterStim procedure thinks it through and makes sure they’re comfortable with their surgeon.

Well, until next time, thanks for following and thanks for caring and you’re support!

~Renee~