Should I or shouldn't I??

[Shelly]

Hi everyone. I am newly diagnosed with I.C. as of late January this year. My symptoms started as of last May (2000). I was in a car accident on April 30th where I sustained a brain hemmorage. I cannot say for sure if this injury caused by I.C. but I can say that within a week of the injury I began experiencing pressure and increased frequency. I went to see a urologist within that first week of being released from the trauma center thinking it was a UTI. However no bacteria was found in my urine. My doctor chose to put me on approx. 14 antibiotics from May until Dec. Pain, Frequency and frustration led me to find a new doctor who finally dianosed me this year. I have received 6 instillations. Not much help came with these procedures except that I did have my first 2 pain free days since prior to my accident. These 2 days gave me HOPE. However the 5th instillation did send me into a flare that lasted a week. After this flare I was finally prescribed pain medicine due to the 2 nights I went without any sleep. I was so run down I got bronchitis and had to be put on another anitbiotic, ugh! The medicines I am currently on are: Elmiron, Urocit K, Ditropan XL, Nerotriptyline, Neurontin, Oxyir, and Protonix. The herbal supplements I take are: Cystitis, Probaccilus Plus (anti-yeast: it works!!!), and Polbax (supposed to boost immune system). On Sat. I received accupuncture for the first time, while I also listen to great meditation tapes for general wellness, pain, and stress by Belleruth Napperstak. I just saw my urologist who suggested Interstim to help with Pain and Frequency. I have read a lot of negative things about Interstim on the message boards and a few positive things. No matter what I have read, I feel I owe myself and my fiance this chance at having a normal life. On May 8th, I am going through the trial week. I have read about many women who have had numerous adjustments. Is this to be expected? Is pain from this procedure or a worsening of symptoms to be expected? I am a teacher and will be back in work on the 16th. I hope I can make it to June. If this treatment works, I may be able to keep this career I chose for myself. If not, I am going to have to consider a less stressful job because so many of my days home on short term disability since the accident have been hard enough. Pain, Frequency, and Fatigue hit me every day and it's a struggle to get through each day not working. In May when I am forced to return, I am truly worried at how my bladder will react to the stressors around me. I hope that my Interstim trial works and if it does I will get it put in during the summer before my wedding in Sept. and my new school year. If not a new job may be the answer. Well, basically I wanted to know if Interstim is right for me. My doctor wants me to try it. I want to too, but I am discouraged after what I have read. But, I truly am thankful that people share their stories because I would not know about the downfalls of Interstim without those who share their stories. Thanks for reading my novel

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hope

[Amanda]

Dear Hope,

I ma having an InterStim trial on Thursday. If you want to keep in touch with me I will tell you how it went.

Amanda
([email protected])

[Melanie]

Shelly,
It sounds like you have already made a decision to go ahead with the trial. We will all help and support you through this.
However, I must state the disclaimer that is often said about Interstim. It is surgery and is considered a last resort treatment. It is not to be taken lightly. I believe Interstim is not yet approved for IC. There are no guarantees or promises. Also, there is alot of debate about whether or not Interstim can help with pain.
It sounds to me like you are trying alot of treatments at once. You might want to consider waiting to see if some of these treatments help.
I am one of the patients who you've read alot about. I've been through 5 trials (3 regular and 2 staged). Tomorrow I'm having the wire taken out. It has not helped me and it's time to move on. But do not let my experiences discourage you. Just know that Interstim is like many other IC treatments... Each of us are different and some treatments help and some don't.
I assure you that I will support you through this. I just caution you to consider all the factors. If you have any questions about going through trials, don't hesitate to ask. I have alot of experience .
As for the trial, every patient describes it differently. Some find it very painful, some don't. You may want to ask your Dr for pain and/or anxiety meds. Be sure to do really thorough voiding diaries before and during trial. It'll help you evaluate results. As for adjustments, in trials it's typically not necessary for adjustments. If you have a permanent implant, adjustments can be common and often necessary. Don't worry about that yet. One step at a time.
BTW I'm getting married this year too. My wedding is in July! Congrats on your upcoming marriage!
take care,
Melanie

[Shelly]

Amanda and Melanie thanks for the speedy response, I really appreciate it. Amanda, I will definately e-mail you and find out how your trial goes, thanks. Melanie, I do remember reading about you. You have had such a rough time; you are a definate trooper. I know it's a last resort and I do feel like a lot is being thrown at me at once. Ever since this all stated I have seen my life get turned upside down. I will go through the trial, but definately take a lot of time to consider whether or not I want to have it permanently installed after my trial. When I read about what you've been through, it opens my eyes to make this decision wisely. I just want my life back, you know what I mean. Just wondering how old you are? I am 25. I got engaged on Dec. 31, 1999. From Jan. 1-until the end of April, I had a great engagement. But since then my life had dramatically changed. I know that God chose for me to come through the brain injury and I am so grateful. When I was unconscious after the hit, I remember praying for God to let me wake up because I was to young to die. Well he listened to me but he also gave me this challenge of conquering I.C. So, everyday I remind myself that there are others out there who have it much worse than me and I need to make the most out of what life has given me. I am inspired by reading everyone's messages, especially yours, to not be a quitter. I feel like a new chapter has been started for me ever since I discovered this website. It is so wonderful to relate to people just like myself. Thank you for taking the time to listen and share. I am very grateful. Congrats with your wedding also. You must be very busy with wedding plans. If you need any help with planning, just let me know. Thanks a million

[Teri]

Shelly~I am one of the sucessful implant patients BUT, it was a last resort treatment for me. (after 15 horrific years) To my knowledge it STILL IS NOT APPROVED as a treatment for IC. I was hooked to the potty before my surgery, going every 15 minutes so I was sooooooooo glad when it was offered to me. I have one of the top uro's in Michigan who has a personal interest in IC and finding a cure and he told me flat out the the device would not help with my pain, and he was right. It really eerrksssss me when dr's aren't 100% truthful with us and I believe that's why there are so many unsucessful surgeries done.

You are so new in your treatment....how often do you void? Have you gone on the IC diet? Even tho I have the interstim, I still don't live a 'normal' life....I still have IC, I just don't pee every 15 minutes anymore. I still have bad days where I am going at least every hour, then, there are the good days when I only go 5 times in a day. You need to look at all the options. I didn't think having the device in me would bother me....but, there are days where it aggrevates me.

I'm not trying to discourage, or encourage....just want to make sure that you try to cover all of your bases before doing something so permanent. Ask your dr how many sucessful surgeries he has done and ask him if he has patients willing to share phone #'s.

I wish you the very best for your trial and I and sending prayers that the Lord will direct your dr to the proper placing of the wires...

tons of hugs teri

[Shelly]

Hi Teri, thanks for writing to me. I have been following the I.C. diet. I think it has helped some but when I am in a flare, it doesn't seem to matter. I go to the bathroom anywhere from 5 or more times an hour. I do think the diet helps but I am hoping that Interstim could reduce how much I go. Being a teacher, going to the bathroom this much is unreal. However, I do thank you from the bottom of my heart for sharing your insight with me. I am getting together a list of questions to ask my doctor when I go in for the trial. I have a habit of bringing in a notepad with me when I visit my doctor, so that I remember everything I want to ask and her responses. So I will definately take this information from you and everyone else before deciding if Interstim is for me. I hope that my wire placement, if I decide to go with Interstim, is placed correctly also. This procedure seems like a hit or miss. My doctor did not inform me of this at all, but i'm glad i know now. Thanks sweety Continue to feel good and stay healthy. Love, Michelle

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hope

[Shelly]

Hi Amanda, I just wanted to tell you that I tried to e-mail you and my message was sent back twice. Why don't you try to e-mail me and then I will write back. Here's my address: [email protected] Good luck tomorrow. Be brave. If you have a relaxation tape maybe that will help you through the procedure. I brought my walkmanwith me to my instillations and listened to a pain meditation tape by Belleruth Naperstak. I think it works. If you want I could get you the address or phone number. Or you could send me a blank tape and I'll tape it for you to use in the future. Let me know and I'll provide you with my address. E-mail me if you can, ok. Good luck tomorrow. I hope you will be feeling o.k. Best wishes, Michelle

[Kara23]

Shelly,

I am doing really well with the Interstim. I'm a supporter of it! It also helps to have an Excellent Doctor and Medtronic Rep doing it for you, so i'd do some research. But only you can really decide if it's right for you or not. If you'd like to know more about my good experiences with it let me know and I'll email you.


Kara

[LM]

Shelly, have you seen a neurologist or a neuro-urologist? I think if your symptoms came on within a week of a car accident it sounds nerve related. You might want to have that looked into as a possible explanation.