My story and contemplating interstim

[marycat2007]

I was diagnosed with ic 5 years ago. My symptoms have gotten worse but I think its plateaued. I've had some good months, but the past 5 have been horrific. lost my job 3 1/2 years ago because of the constant pain and frequency. I was awared disability (without the help of an attorney) 3 years ago. I will describe my symptoms below but I will tell you that I had a cysto (in which I had to be put under) 2 months ago and my Dr stated that he has never seen a bladder as ulcerated as mine. In addition, my bladder can barely hold 7 oz of fluid at one time. Before I talk further about my condition, I want to let you know that I have a tremendous amount of faith and find the most comfort when I am either reading spirtual material or talking with God or Mother Mary. I am grateful for having dozens of friends who really care and pray for me, a loving and caring family, a terrific ex husband and kids who are angelic, my faith,this chat room, disability, medicaid and medicare. As most of you can attest to, one of the worse consequences of IC is the amount of stress it puts on our loved ones. I must constantly remind myself to tell them how grateful I am for their unconditional love.

I have tried many medications and treatments and here are the ones that I feel work the best. I am currently on a fentanly patch , vicodin 30 per month, wellbutrin, zoloft, 50 mg trazedone, zanaflex, klonopin and pyridium as needed. Not sure or the exact ingredients but the DMSO with the garlic taste helps although the procedure itself is extremely painful. The childsize catheter put me in tears and I am in intense pain 8 hours after. I feel like I have to urinate but nothing comes out and the pain in my uretha is horrible. I also go to physical therapy to loosen my pelvic floor muscles. The therapist basically massages the muscles in the pelvic floor, my stomach and buttocks. I highly recommend it! Due to insurance I can't go every week, but do go usually 20-24 times a years. When I have really bad flares and it feels like an infection, antibiotics (amoxcifin?) always helps. When I have a relatively good day, I work work out. I usually will ride a recumbent stationary bike, lift weights and swim. I love to swim and feel that it is the one excercise that doesn't make my bladder bounce up and down. I may have some pain afterwards, but the endorphines and the feel of "normalcy" that follows a good workout are worth some pain. I try to follow the cancer diet which basically consist cancer diet which consist of purifeid water, lite soy milk, no refined sugar, whole wheats, oat meal, fruits (i eat bananas, pears, mangos, melons and occasionly apples, raw vegetables especially spinach, fiber one cereal, eggs, brown rice, and no meat. I do cheat on occasion. I am thin and have a high metabolism so its difficult not to cheat. Plus with kids, I have to buy foods outside this diet and temptations begins. Last month I started wearing depend diapers or pads on long drives and outing sand it's really help with the anxiety of having to urinate and the pain the accompanies the bladder when full. Its great when driving because I simply relax and let go! They really work well and have never had any leakage. Put your pride in your pocket and give them a try!

Here are the meds and procedures that don't work. I've tried elavil twice before, but after 2 months I didn't feel any better and I had gained 15 lbs. Plus I was tired and had intense nightmares. With detrol, I feel like I have to go but nothing comes out and I get that crawling out of the skin feeling. Vesciare irritated my bladder way more than it helped. My bladder is so small and leatherly that hydros don't work either. I have been on elmiron 4 months and I don't feel any better. In fact, I think it irritates my bladder more than it helps, but I will stay on it another 2 months and see if things improve.

My symptoms are as follows:
-I urinate on average 50 times a day-10 at night
-every morning my bladder is extremely irritated and makes if difficult to get out of bed before 11:00 am.
-I usually have daily flares which feel like burning, stinging, pressure and when I urinate it is painful during and about 10 minutes after
-I usually have a constant urge to urinate
-at times I have deep aches in both legs, buttocks and bottom of my feet.
-during a flare, it is excruciating to walk and even to breath and I have to use my hand to push my bladder up and in an attempt to relieve the pain
-I get migraines usually 2 times a month. I can't do anything but lay in bed and usually vomit throughout the day
-due to pain medication, my memory and concentration has worsened. to combat this, I usually read 3 books a week and listen to book tapes in my car
-stress automatically creates bladder pain
-ibs constipation which puts added pressure on the bladder
-I can get very short when the pain is bad, but I become an angel on those moments when I feel good!

I've had interstim 4 years ago and it didn't work because the wires weren't' intersted correctly and/or they moved. I had a third surgery to remove the device, which left my with scar tissue and a 2 1/2 by 1/2 inch scar on my buttocks plust I had a bad infection after the second stage.
I am scheduled to have stage one interstim next tuesday but I am really tentative about it. I feel the pain is my biggest problem and this doesn't work with the pain. Plus my bladder is so small and beat up, I feel how much can this really work. I am praying about it but I am so confused. I've read all the interstim posts on this site and the majority seem to be negative. In addition, my Doctor hasn't had the time to sit and talk to me about it. Any advice?
Sorry for the long posting and thank you so much for taking the time to read it.

[Katrina]

Faith has definatly helped me through many ruff times!

What to do when you have a small bladder and don't respond to hydro's??? I mean that sort of says that nerves and spasms aren't your only problem. If it weren't for the fact that you say pain is your biggest problem I would recommend bladder training since bladder size isn't something that is easily treated with medication.....but pain usually needs to get under control first.

I guess I would recommend treating that constipation as much as possible since straining to go can cause pfd to flare which can really increase IC pain...so Magnesium, water, probiotics, whatever you can do you.


That pain that gets into your legs may be PFD
http://icandme.9.forumer.com/index.php?showtopic=6 pelvic floor dysfunction (PFD) learning to relax the muscles treatment options symptoms of PFD and more

magnesium may help the migraines a bit too...I take some for both migraines, and constipation.

My Neurologist gave me some info on alterantives for migraines (she doesn't want me on any more drugs ...my list is too long!) so email me if you want the info!

I don't know if your constant urge to urinate is pain or or retention or a combo but I would look into it as being pain or PFD related if I were you!

A lot of your syptoms sound to me like PFD is contirbuting but many patients have multiple things contributing to their symptoms and I supsect you do too!

I hope you feel a lot better soon!!!

[mayray]

elavil

I was on elavil for 3 months before I noticed any difference. THis was 6 years ago and it was 50 mg and I know the tiredness side effects are bad but I kept with it. it turned out to be my saving grace. I am on 5 mg now and am still in remission, have been for 6 years. If I had not stayed on it for 3 months may not have known that it could help.

[rjyoon]

My interstim has helped quiet my muscle spasms, so I can use what little bladder capacity I have left. It's made a huge difference in my sleep quality & therefore my quality of life. For example, I no longer go to sleep while driving (e.g., stoplights on the way to work). This never scared me & I never had an accident, but it sure scared others who I told about it!

[vm]

Just wanted to you to the ICN! I am also a member of AA since 1990. We have an AA/NA board here that is only active some of the time, but there are other people in recovery here at the ICN.

[tigger_gal]

hi there. welcome to the boards. I had my stim put in 4 ears ago.. I am going in for an upgrade tomorrow morning. Its with the new unit and remote.
I am having a new trial, then the removal and re implant.

How did your surgery go?

[jen74]

I have a friend who has the interstim and it has helped her with the frequency. It did not take her pain away, and she still has alot of frequency, but it did cut down on her frequency by half. According to my friend, it does take time though. She did not get better right away after the interstim, it took over a year to see some changes, but in the end it was worth it for her. Good Luck.
Jen

[marycat2007]

Interstim Disaster

First of all, I want to thank all of you for responding to my post. I can't express the joy and hope it gives me. Now for the bad news. On Tuesday, May 9, I went in for phase II interstim surgery in which the metronic device is actually placed into the buttock. I was getting about a 40% reduction in frequency and my pain had noteably subsided. Although the second week, the incision was very painful and the physicain assistant said it was fine and the stimulation wasn't working as well. However, I was told that both my frequency and pain would most likely improve over time. Keep in mind that I had the same surgery 4 years ago and had the device removed a week after due to an infection (not sure if it was a staeph but it was major). Doctor Craig Smith knew this yet I was the last person to go into surgery (edwards hospital in Naperville) for the first phase. Furthermore, strong antibiotics and no monitoring of a staeph infection took place during the first 2 weeks. Upon opening me in surgery for phase II, he found a large infection which turned out to be a hospital derived staeph infection. Thus everything had to be removed and I was left with a draining bottle for the infection, another large scar, a huge hospital bill, and antibiotics which highly irritate my bladder. Upon waking up after the surgery the dr had a big smile on his face and said hey you didn't pee on the bed this time, we drained 150CCs from your bladder. Then with the same smile he said, we couldn't insert the device becasue of the surgery. Then he left. I was beyond upset. I thought he was kidding. Anyway, since the surgery, my bladder pain has gone through the roof. Plus the pain feels different from previous pain. I was having trouble walking without doubling over in pain and basically lied in bed for a week. THis past WEdnesday, I went into his office to get a DMSO. I hate getting these because the catheter is so so painful and I am in unbelievable pain, and crawling out of my skin for the next 8 hours. I take massive amounts of pain meds, but still its excruciating. I was told the Dr would do the procedure because he knows exactly what type catheter to use, the exacy cocktail recipe and to use lidocaine before inserting the catheter. However, all the sudden the nurse enters the room and without saying anything shoves this large catheter into me with about double the amount of CCs I normally can hold. I have had many severe flares, given birth to 2 children, but I never felt that much pain in my lilfe. I could do nothing but scream and shake and immediately had to empty my bladder. It felt as though I had battery acid in my bladder and my uretha had a hole in it. The pain kept getting worse scream and shook uncontrollably. The nurse took me to the er for some type of relief. Luckily my doctors office is in the hospital but it took about an hour until I was give some morphine iv. Even then, I still had a lot of pain. I called my best friend and she met me there and thank God for her. She also has chronic back pain and has seen my suffer for the past 6 years. To make matters worse, my tooth crown fell off and my car had overheated going to my appointment. My friend filled the coolant with antifreeze. My doctor's physician assistant called my the following morning and told me that DR Smith no longer wanted to see me. I was going to change docters but the manner in which that was told to me was extremely rude. If anyone of you live in Dupage county Illinois, avoid Dr Craig Smith as a doctor. He never seemed to have a clue as to how sever my condition was nor did her ever talk to me more then 1 minuter per visit. If anyone know of a good doctor at one of the larger Chicago hospitals, i.e. University of Chicago, please let me know. I must find a docter that specializes in IC and is much more proactive and caring in his approach. Fortunately,I had a appt with my pain management dr yesterday and he doubled my fentanyl patch to 100 mg 10 per month. I am still in pain but got a some relief from the new patch. MY uretha is killing me and I trying am so hard to remain grateful for all the blessing that God hs given to me, but its been a struggle. If I lose my faith, I will only get worse.. Fortunately, I've gotten 12 phone calls from friends expressing sympathy, prayers and offering to help me anyway they can. Thank God I have been blessed with such wonderful friends. I know that I have done nothing but complain but it feels good to get it off my chest. Whenever, I have a resentment against anyone like my Doctor, I pray for that person for two week asking that God bless him with all the things I want from life. I can't afford resentments because of the undue stress and energy it causes. I also have been reminded over and over again that God works in mysterious ways. Thank you for listening. ANy advice as to any other type of treatments I can try?? You can respond or send my a email if you'd like. My email is [email protected].
God Bless all of you,
Mary

[snik4]

interstim should be a last resort

I had the interstim put in November 05. i had to have it done twice because of complications. I have been in pain since it was put in. I am having it removed on June 12th. Please dont have it done unless you have no other options. the surgery is not as simple or easy as they tell you it is. i dont want anyone to go through it and have as much pain as I have.

[kadi]

Hi

Hi Mary,
Oh, wow, you have been through the wringer. First off, sending a hug & prayers that you will find a new IC specialist who will be able to help. Definitely check out anything you read on these boards with a doctor as we're just patients too.
These are just a couple of thoughts that come to mind reading your posts.

1. The diet you are on is mostly IC friendly, but you are eating some foods that would send my IC through the roof: lite soy milk, bananas, mangos, melons and occasionly apples, spinach, fiber one cereal. These foods are ok for some IC patients, but others find them irritating to the bladder. The Fiber One cereal contains added vitamins & minerals & BHA/BHT, preservatives many IC patients cannot tolerate. Here is a link to the IC diet. You might try eating only foods in the "usually okay" column for a few weeks & see if that will reduce your pain a bit. http://www.ic-network.com/handbook/diet.html
If you are taking a multivitamin, do stop that for awhile as well.

2. I didn't see any antihistamines on your list of treatments tried. Many IC patients find relief with Atarax.

3. Have you tried rescue instillations? These are more soothing than DMSO, can be done at home up to daily if needed. There are a number of formulas out there for rescue instillations; I use Heparin/Marcaine/Sodium Bicarbonate. I rely on these heavily, as many of the other available treatments out there did not work for me.

4. If the Elmiron is bothering your bladder, it can happen. If your last five months have been awful & you've been on Elmiron for four of them & "think it irritates (your) bladder more than it helps", you should definitely consider stopping it to see if that is part of the problem.
I was on Elmiron for 2 months, it made me much worse. And it did it very slowly, so that I wasn't sure if my IC was just progressing or if it was the Elmiron. Once I stopped it, it took a couple of weeks to clear out of my system & then I was back to my prior level of IC.

Welcome to the ICN! I am hoping this will be a place of support & care for you as you take the next steps to getting better again.
Love,

[tigger_gal]

wow so sorry you had to go thru any of this.. sending yo big hugs and lots of prayers to get well soon.

[jen74]

Hi Mary.
Wow, I am sorry you had to go through all that. This is why I am VERY skeptical of all doctors and their treatments. Now a days, I research everything before making any decisions to do anything!! You just cant trust these doctors these days as they are all out to make $$ and dont seem to give a darn about the patients.
Are you close to Chicago IL? I am seeing a urogyne who seems pretty knowledgable about IC. He is Park Ridge. Feel free to email me or PM me and I will give you the info of you would like. I hope you feel better soon hon.
Jen

[humpieumpumkin]

You have nothing to lose. THe interstim is the best decsion I have even made in my life. :woohoo: If the trial doesn't work, you simply dont get the device. I had tried everything except DMSO and cya, although I wish I would have made the interstim sooner. Everyone will say its a last resort, which is true as far as insurace is concerned, plus its surgery which always has risks. For me it was a no brainer, and I do wish it was my FIRST choice. It doesn't work for everyone though. I just want you to know it is reversable, and if the trial doesn't work you wont have to get the device. Ask me any questions you may have!

Erika

[humpieumpumkin]

I just read a post I skipped over ...I am so sorry to hear it didn't work. Sending hugs and prayers

Erika