New to the board, not to IC

[zyphia]

I am 68, was diagnosed in 03, have the InterStim to help with pain and it does help. I also had some bladder instillations of Elmiron last summer and it helped a great deal and will have more when I feel the need. I am pain free most of the time and when pain does flare I take a Rx strength Ibuprofen and/or a Pyridium and a hot water bottle to bed and have a pity party. I watch very carefully what I eat and drink and never drink anything with caffeine in it. I also have Parkinson's so have a double whammy. I have various health problems too numerous to list and I am sure you don't want to hear about my 17 surgeries for everything from spinal surgeries to benign tumors to surgical intervention for GERD...so will spare you. I will say tho, hang in there...there is light at the end of the tunnel. My family is shocked I am sane. So am I..hahaha.

[Lori1975]

Hello zyphia,

I am looking into having the interstim proceedure and was hoping you could tell me a little more about your experience. Was it painful after the proceedure? You said it helps...how much on a pain level scale? I wanna go this route because it seems like medications, bladder instills, and other therpies give little to know help. According to this therapy it is supposed to help with retention, urgency, and frequency. Have you found this to be true in your case? Is your bladder better able to heal now? I look forward to your answers and hope things continue to get better for you.

[zyphia]

I had the procedure done in September of 03 but first had a temporary one put in to see if it would be of any benefit to me, and it was, so after using it for about 3 weeks I had the permanant one put in. The surgery is simple and fast, they used surgical glue to close the small incision in my right buttock so no need for a follow up for stitch removal, and the area was kind of tender for a while, and bumping it against something by accident during the healing process was painfullllllll. It took me a while to learn to adjust my settings. When I had the perm implant the tech adjusted it before I was discharged but I could adjust it myself and did when my pain increased. And yes, it did help me with my pain and for years I kept the same settings. I have not had the lithium battery changed but am most likely due for a change soon and the uro told me when the time does come for a battery change (mine will have lasted 8 years) that he will put in the newer InterStim, a much smaller version than mine with an even longer lasting battery. In addition to the implant I also have Elmiron instillations on occasion and use Pyridium on an as needed basis as I have found as a bladder analgesic it works the best. I am relatively pain free most of the time as far as the bladder goes but have other pain areas so any relief anywhere is wonderful. My bladder, I don't suppose, will ever totally heal, as my uro said it is still quite *angry* looking, but for every minute, hour and day it is without pain I am thankful. I am very cautious about what I eat and drink....I only drink cranberry juice I make from cranberries I buy at the grocery store, I cannot eat citrus, I don't drink sodas, no coffee unless it is Tim Horton decaf (it is the only true decaf as far as my bladder knows, all other decafs have me peeing like crazy) I have my own well and have a very sophisticated filtering system and have the water tested on a regular basis. I have passed calcium carbonate kidney stones in the past but they are quite common in this part of the US...the Southeastern US. When I have an Elmiron instillation I can hold it for up to 6 hours! The one drawback, and then it really isn't that big a deal, is that once a year my daughters and I fly to Europe for vacation and going thru the TSA security can be kind of funny because I do have a lot of different metals in my body, not just the lead in the battery, but other materials from other reconstructive surgeries on my lumbar and cervical spine. Also, a few times I have had a tiny zap in the butt going into a Lowe's Home Improvement store and a Big Lots because apparently the theft detector settings were set kind of high and set off my implanted InterStim, but just for an instant. Whatever you decide, I wish you luck.

[Lori1975]

Thank you for the feedback. I am surprised you can have cranberries. That usually sets a huge flare-up for I.Cers. It is good for UTIs but for cracks in your bladder it can be pretty bad. I can only eat blueberries, mellons, and low acid apples. What is Tim Horton's decaf? A lot of decaf coffees I heard still have a low amount of caffine in them. Do you know if that is true?

I have always wanted to do a detox for metals, candida, and general reasons but I am afraid it will detox me of all the medications I'm currently taking (which would be devestating). If you or anyone has heard of a detox that doesn't do this I would love to know.

I can't imagine setting off security systems...that is pretty funny. But it is something that I am willing to put up with if it takes the pain away. Again thanks for the explaination. I wish you well.

[zyphia]

In reply to your comment about the cranberries, I think my problem with commercial juices was more the fact that a study by the National Consumers League (NCL) has written to the Food and Drug Administration (FDA), accusing some producers of cranberry drinks of false marketing. They said they are concerned that some producers are capitalizing on the healthy image of cranberries and cranberry juice when it is “really little more than cranberry skin infused with sugar syrup.” So if I make my own at home I know I am getting the full benefit of nothing but pure juice, no preservatives, no sugars. I have not had a problem so far. Another thing I have found helpful is a grape juice that is sold as the second best selling grape juice in America, with only Welch’s outselling it (I don't quite know how to describe it because I am not Jewish but found it quite by accident once in the store). The label said it was Hebrew and pure and was 100% Concord grape juice. I think it is Kedem. It was a 48 ounce bottle and was $4.99 and was so rich I had to dilute it with 48 ounces of water but it was pure juice and delicious. I try to drink 64 ounces of liquid each day and it was so good it made it very easy to get in my quota. It is by far the best grape juice I ever had and worth every penny. And in addition has all the health benefits of the grape.

As far as the coffee goes, Tim Horton is a coffee named for a dead Canadian hockey player but it is one of the best coffees I have ever tasted and I have had coffee on 3 continents and in most of the states and it is by far the best decaf I and my bladder have ever had. My sister lives in Toledo, Ohio and can buy it up there so once a year will buy me a dozen cans and ship them to me. I am the only coffee drinker in the house (just me and my husband now) and I only make one small pot in the AM. I am in the South and you cannot buy it down here and altho you can buy it mail order the shipping and handling are outrageous so I just have her ship it to me. He takes 12 cans to the local UPS store, they pack and ship it to me and I am a happy soul. All for about $85.00. There are several ways to decaf coffee (swiss water bath, CO2 method, and sparkling water method) and I think the Horton people must use the water bath one without the carbon dioxide. All methods used to decaffeinate coffee are based on the same principles. As such, neither all of the caffeine is removed from the coffee, nor are all of the flavor compounds returned or left in the coffee. The chemical composition of decaffeinated coffee is altered, and therefore the flavor and aroma are changed. That is why I think Horton coffee retains so much more of its flavor. So remember, there is always going to be some caffeine in that decaf drink you are sipping, no matter what the label says.

[bob04951]

You are definitely a sucess story. Good for you! But wow, to be able to drink cranberry juice STRAIGHT from the cranberry! Never heard of anyone able to do that. Very happy for you, you are obviously very aware of triggers and take care of yourself. So many on here have multiple health issues and remain sane, we cannot give up on this thing. SIGH. It's just another day, and we deal with what we are dealt. Keep up the good work, and wish you continuing good luck. Jill, wife of Bob

[zyphia]

Thanks, I do try to remain sane. At 59 I had to retire from a job I loved and thought I would have to give up a life I adored...travel. My spine had to be rebuilt. I had severe spinal stenosis and was forced into disability retirement and surgery to rebuilt my lumbar spine and cervical spine, which are now stainless steel and titanium. I used to go to Europe every year for 2 weeks with my sister and when I had the news that I would have to have the surgery the first thing I wanted to know was "am I going to be able to walk" and was told yes, but maybe with some difficulty. Well I am walking, but with the aid of quad canes because since then, in 2006, I was diagnosed with Parkinson's Disease and have a movement disorder (I don't have the type that Michael J, Fox has) but it did not deter me from my travel. I have been on my yearly jaunt to Europe every year since 1999 and plan on going every year until I am no longer able to walk down the aisle of the airplane to my seat. The airlines are very accomodating, and say what they will about the TSA people, but they have always been very kind to me. I have a very positive outlook on life and will not let something like IC or Parkinson's get me down. I also found out last March that I had a seizure disorder on the left side of my brain that was causing me to have severe head pain, not headaches, per se, but actual head pain, which was hard to explain to a neurologist, and I finally found one, after seeing 4 of them, who understood the difference between a HEADACHE and HEAD PAIN. I am a determined old broad if nothing else. I never knew a seizure disorder could cause HEAD PAIN but a simple medication that has been around forever and has proven to be safe for babies as young as 18 months old caused the pain to go away with the very first dose. Anyway, I do tend to ramble. Best to you both. You have your lives ahead of you and I hope the best is yet to be.