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Hello everyone! I think most of you know that I am having my first stage surgery on Friday. Since Jen's diary has been so helpful to me and I'm sure, to others, I thought that I would do one as well. Jen's main issue is urgency/ frequency, and mine is severe retention, so those of you suffering from retention will get my view on the surgery.
I have been self-cathing for about eight months now. I can void on my own a couple times a day and then I cath a couple times a day. In reality, I shouldn't be voiding on my own at all, because when I do, I always have to push to get the flow going and to keep it going. Not good!!! Also, I have bladder spasms that seem to worsen after I void. And, whether I cath or void on my own, I have urgency after the void. I can usually go back into the bathroom or re-cath and get more urine out. Also, I have pretty much lost all urges...I don't ever feel as though I have to go, except for the urgency after voids. Other times, I just know that I need to because it's been many hours or sometimes I feel a slight pressure. Also, I have severe constipation not caused by meds. I go anywhere from three to four days to two weeks without a bowel movement! I often even take correctol or senekot and it's still days before I can have a bm...and the straining is horrific to get it out, with or without stool softeners and laxatives. And, I have the "urgency" after a bowel movement as well...I always feel like there is more there but can't get it out. So, in one sense, I guess this is better than the frequency that many suffer, but in another, cathing sucks and I am always in pain and worried about infections and worried that I won't be able to get the urine out through voiding OR cathing (this has happened before and I thought I was going to die it hurt so bad).
Pain-wise, I have severe PFD also, which causes just about constant pain along with the IC. I have severe lower back pain, lower abdominal pain, bladder spasms, and pain directly from the urethra. I describe the back pain as feeling like I have 50 pound meat hooks hanging from my hips. I have been doing physical therapy for almost a year, and we have seen little progress in my pelvic floor muscles. They simply will not relax. My hubby even went to PT with me to learn how to do some of the internal massaging, and usually, he can only fit one finger into my vagina, and then he's apologizing because his fingers are too big! I can't remember the last time we had intercourse, but I do remember that it was horrifically painful.
So, that's my problem in a nutshell. My doctor (which, incidently, is the same as Jen's!) and I discussed interstim for months, because he wanted to exhaust all other viable options before proceeding. We reached that point in December and scheduled my surgery.
I began my antibiotics yesterday. Boy, do they make me nauseous!!! I spent this afternoon hovering over the toilet and dry heaving severely. I had nothing left in my stomach, but I continued to heave and my mouth continued to water significantly (as it does when I vomit). So, I am now on the couch with the trashcan beside me. Anyway, I also quit taking my Elmiron today (per dr. orders). Maybe all my hair that I've lost from Elmiron will grow back in the next couple days while I'm off it. LOL!!
I did my pre-op phone call with the hospital on Monday and the lady was so very nice! My procedure is at 10:30 and I have to be at the hospital at 9:30. My hubby is in the middle of a major project at work, so my mom is going to come and pick me up and drive me there at 9:30 so my hubby can just go straight from work to the hospital about 10:00. My dad (who is a semi-retired attorney) has a seminar today through Friday, but has decided to skip Friday so that he can be there for my surgery. I am sooooo lucky to have such a supportive family!!! My dad has even decided to get the IC ribbon tattooed on his arm with my name underneath...he currently has NO tattoos and if you saw him or met him, well, he's not the tattoo kind of guy, so it really brought tears to my eyes when he told me that.
Anyway, the nurse also told me that I had to get some special cleanser to bathe with Thursday night and again Friday morning, and luckily, my mom is a nurse so she just got some for me at the hospital so I didn't have to worry with it. I went to Target yesterday and got some comfy blankets to sleep with, and I went to the grocery store and got all my favorite comfort foods and drinks. I am going to try and get the house cleaned and get some laundry done this afternoon, but I know that my hubby will yell at me when he gets home, because he wants me to lie on the couch and just rest, especially with the nausea. Sometimes it's easier to try and do some projects, though, to keep my mind off things.
I also started my voiding diary yesterday, and I have tried to be very specific with my symptoms, having to push to void, the pain that increases after a void, etc. I know the more you write the easier it is to see a difference and if necessary, the easier it is to convince the insurance company for the permanent implant.
I am really nervous about the surgery, not really about having surgery, but this is the first surgery I've had that wasn't a "sure thing." I know there's nothing I can do to make the chances better that the interstim will work for me, so really all I can do is hope and pray that it does help. However, I just have a feeling that I will be really depressed if it doesn't work...because I feel like this is my "last chance." I know there's other meds to try, more therapy to do, and hopefully future advancements, but I really feel like this is the last REAL possibility that I could get some better and lead a more normal life. Packing catheters and KY and a bowl and all that other crap really takes up too much space in my suitcase...I could probably fit another pair of shoes in that spot!!! LOL.
So, I guess that's about it for now. I hope that this journal will help some of you considering interstim, especially those of you with retention and similar problems.
Claudia
I have been self-cathing for about eight months now. I can void on my own a couple times a day and then I cath a couple times a day. In reality, I shouldn't be voiding on my own at all, because when I do, I always have to push to get the flow going and to keep it going. Not good!!! Also, I have bladder spasms that seem to worsen after I void. And, whether I cath or void on my own, I have urgency after the void. I can usually go back into the bathroom or re-cath and get more urine out. Also, I have pretty much lost all urges...I don't ever feel as though I have to go, except for the urgency after voids. Other times, I just know that I need to because it's been many hours or sometimes I feel a slight pressure. Also, I have severe constipation not caused by meds. I go anywhere from three to four days to two weeks without a bowel movement! I often even take correctol or senekot and it's still days before I can have a bm...and the straining is horrific to get it out, with or without stool softeners and laxatives. And, I have the "urgency" after a bowel movement as well...I always feel like there is more there but can't get it out. So, in one sense, I guess this is better than the frequency that many suffer, but in another, cathing sucks and I am always in pain and worried about infections and worried that I won't be able to get the urine out through voiding OR cathing (this has happened before and I thought I was going to die it hurt so bad).
Pain-wise, I have severe PFD also, which causes just about constant pain along with the IC. I have severe lower back pain, lower abdominal pain, bladder spasms, and pain directly from the urethra. I describe the back pain as feeling like I have 50 pound meat hooks hanging from my hips. I have been doing physical therapy for almost a year, and we have seen little progress in my pelvic floor muscles. They simply will not relax. My hubby even went to PT with me to learn how to do some of the internal massaging, and usually, he can only fit one finger into my vagina, and then he's apologizing because his fingers are too big! I can't remember the last time we had intercourse, but I do remember that it was horrifically painful.
So, that's my problem in a nutshell. My doctor (which, incidently, is the same as Jen's!) and I discussed interstim for months, because he wanted to exhaust all other viable options before proceeding. We reached that point in December and scheduled my surgery.
I began my antibiotics yesterday. Boy, do they make me nauseous!!! I spent this afternoon hovering over the toilet and dry heaving severely. I had nothing left in my stomach, but I continued to heave and my mouth continued to water significantly (as it does when I vomit). So, I am now on the couch with the trashcan beside me. Anyway, I also quit taking my Elmiron today (per dr. orders). Maybe all my hair that I've lost from Elmiron will grow back in the next couple days while I'm off it. LOL!!
I did my pre-op phone call with the hospital on Monday and the lady was so very nice! My procedure is at 10:30 and I have to be at the hospital at 9:30. My hubby is in the middle of a major project at work, so my mom is going to come and pick me up and drive me there at 9:30 so my hubby can just go straight from work to the hospital about 10:00. My dad (who is a semi-retired attorney) has a seminar today through Friday, but has decided to skip Friday so that he can be there for my surgery. I am sooooo lucky to have such a supportive family!!! My dad has even decided to get the IC ribbon tattooed on his arm with my name underneath...he currently has NO tattoos and if you saw him or met him, well, he's not the tattoo kind of guy, so it really brought tears to my eyes when he told me that.
Anyway, the nurse also told me that I had to get some special cleanser to bathe with Thursday night and again Friday morning, and luckily, my mom is a nurse so she just got some for me at the hospital so I didn't have to worry with it. I went to Target yesterday and got some comfy blankets to sleep with, and I went to the grocery store and got all my favorite comfort foods and drinks. I am going to try and get the house cleaned and get some laundry done this afternoon, but I know that my hubby will yell at me when he gets home, because he wants me to lie on the couch and just rest, especially with the nausea. Sometimes it's easier to try and do some projects, though, to keep my mind off things.
I also started my voiding diary yesterday, and I have tried to be very specific with my symptoms, having to push to void, the pain that increases after a void, etc. I know the more you write the easier it is to see a difference and if necessary, the easier it is to convince the insurance company for the permanent implant.
I am really nervous about the surgery, not really about having surgery, but this is the first surgery I've had that wasn't a "sure thing." I know there's nothing I can do to make the chances better that the interstim will work for me, so really all I can do is hope and pray that it does help. However, I just have a feeling that I will be really depressed if it doesn't work...because I feel like this is my "last chance." I know there's other meds to try, more therapy to do, and hopefully future advancements, but I really feel like this is the last REAL possibility that I could get some better and lead a more normal life. Packing catheters and KY and a bowl and all that other crap really takes up too much space in my suitcase...I could probably fit another pair of shoes in that spot!!! LOL.
So, I guess that's about it for now. I hope that this journal will help some of you considering interstim, especially those of you with retention and similar problems.
Claudia
Just double-checked all my paperwork and also called the surgery center, and they confirmed it. Perhaps you should call too so that they have time to rearrange things if necessary and there isn't a traffic jam on Friday?
keep me posted you two!
I hope this is just as much a blessing to you as it has been for Jen!!!
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