Jeannie Snyder works in the Day Surgery Unit/PACU at St. Joseph East. She has worked many years as an Operating Room R.N. and in the past, worked 3 years as a Research R.N. She has also worked with Debra McDonald on her Hope Eye Care team for the North West Haiti Christian Mission.
May 13, 2005
1- Why is IC so hard to get a diagnosis?
From my experience, IC is difficult to diagnose because physicians are not well schooled about the disease and often it goes undiagnosed properly. From a woman’s point of view, we are treated as if it’s all psychotic! The physician, instead of sending you to a Urologist that is knowledgeable in IC, send the patient home with a “band aid” such as medication for depression and sedatives!
The best way to diagnose IC is to do a cystoscopy (scoping of the bladder under anesthesia) with hydro distention and biopsy (filling the bladder to capacity and taking a biopsy to be sent to pathology). When the bladder is distended, you can see the hemorrhagic areas. Some have a “Hunners” Ulcer…and ulcer in the bladder wall. Others may not. During one of my Hydro dilatations, I opted to have a spinal so I could see for myself what the tissue looked like. It was like raw hamburger! I thought, well no wonder I hurt!
2- Explain your personal pain management approach to IC
As time went on and I tried many medications that didn’t bring relief, I opted for the Interstim Implant. It took care of most of my symptoms by using a wire with 4 leads inserted into the sacral notch of the hip area and guided down near the sacral nerves. It give off a frequency of impulses to the sacral nerves that govern the bladder and it’s functions.It helps in the painful pelvic floor pain, urgency and frequency.You cannot have MRI’S after insertion or go through security scanners at airports. You are given a card to keep with you at all times to hand to the agents explaining the device you have implanted. They just do the pat down procedure. In IC patients it’s a great relief until you have a urinary infection or flare up. Also and I have experience, you can develop more ulcers. Dr. Ericson has had great success in lasering the ulcers (again under anesthesia) but with me, new ones formed. That is why she put me on a low does of Cyclospoine A to suppress the immunity.My bladder was no longer “angry’ and I have not developed any since. This is the first time I have not had any pain!
I watch my diet and also take Prelief that you can get over the counter to neutralize the acid in your urine if you were to eat something acidic. I cut caffeine and drink nothing but water (soda’s make it worse) for 4 years now. I also take Elmiron but it didn’t seem to do any good in replacing the lining of the bladder wall…hence the ulcers. I also had to cut out as much stress in my life as I could. I have taken a leave of absence from work to just focus on working on me. I had to find my limitations and I do work in a stressful area. I didn’t realize how much until I actually took the time off. I guess you could say I was in denial big time.
Now that I do not have pain, I am on an exercise regimen with a trainer and started back hunt/seat/jumping riding lessons. Before, I was in so much pain in a flare up, my main concern was where was the nearest bathroom, how long would it take me to get there and whether I could make it or not!
3- How is IC different in men than in women?
I know IC does not have boundaries of sex and age. I am not familiar how men are affected since I have only women to call me for advice. I do know children can also have the disease. From what I have heard, they mostly deal with spasms and pelvic floor pain.
4- In Your Opinion, what are the best three treatments (a drug, a procedure, and a self help)
I also, since I have bad knees (no cartilage) take Nutramax Cosamine DS. That is the most pure form on the market. There was a research study done by John’s Hopkins Hospital that proved it. The company will send it to you. There is an 800 number to call and you and set up an account with them which is cheaper than buying it off the shelf. You can get a 210 count bottle for $63 dollars (1-800-925-5187). This does help to keep down the inflammation. It also has glucosamine besides chondriton in it. I take it 3 times a day and have for the past 4 years. I keep taking the Elmiron hoping it will help but I haven’t seen a change with it. The cyclospoine A has been the only thing that has made a dramatic difference. This drug must be monitored for blood levels and it can be toxic to the kidneys. It also must be avoided with certain other medications because of interactions with those medications. It is also given to transplant patients because it helps suppress the rejection of organs which in IC your body is attacking itself. It is a T-cell suppressant. What we are given is a low dose of Sandimmune so it’s less likely to have those side effects. I was fatigued during the first few weeks but now have my stamina and strength back. Also, you cannot take vaccines with live viruses.It comes in a gel capsule and peel packaging.
When I would have the hydrodistentions, Urimax helped with the spasms post-op. It also helps with flare-ups. Urimax also not only relaxes the bladder (which is a muscle) but has antiseptic properties as well. and anesthetic properties as well as an anticholinergic (relaxed the bladder). Some people can use B&O Suppositories for this but I am allergic to Codeine and any medication chemically related to it. I had also tried bladder cocktails such as Rimso-50 (broke out in a rash and had violent spasms as if I were going to deliver my bladder!) and the Heparin cocktail. Neither worked to help put a new lining on the bladder wall .I also tried Neurontin to help with bladder capacity but could not see a difference Another medication. You must be careful when going off the Neurontin due to the possibility of causing a seizure. It has to be tapered down in dosage. I am on is Singulair 10 Mg. once a day to help fight the mast cells which in numbers increases inflammation as in Asthma. I was on Tagamet but had to stop for it interferes with the Sandimmune.Tagamet helps target histamine release which occurs in an infection or inflammation.
I also take 1 Mg. Valium to help relax the bladder since it is a muscle 4 times a day and Elavil 50 Mg. at night for the same reason. They help with the nerve pain pathway and I wanted to try to enlarge my bladder capacity which had gone down to 300 cc’s at dilatation. Usually I could only hold 50 cc’s and had painful spasms at the end of my stream. I was so sleep deprived I could have played lead role in “Night of the living Dead.” The only other medication I take is Estrace 1 Mg. due to a total hysterectomy with ovaries removed in 1993
5- I want to thank you for your time and help in this project. Is there anything you’d like to add about where we are in IC research?
My Urologist, Dr. Deborah Erickson, came from Pennsylvania. She worked with Dr. Susan Keay and they found the protein that produces the toxin that attacks the bladder wall. There will be a cure when they can find out how to turn this off.
Also from patients I have talked with, people can have more than one autoimmune disease going on as well. One young lady I know has had endometriosis (had to have a hysterectomy), IC and developed Lupus!
My first Urologist tried injecting Botox into the bladder wall nerve pathway which Dr. Chancellor in Pittsburg has tried. It lasted for 6 months the first time (for bladder capacity) and the next time it lasted only 3 months. I am a redhead and it was published that Redheads need 25% more anesthesia. So…who knows why we are so different!
There is hope out there for us with this horrible autoimmune disease. We just have to find ways to treat our symptoms until that day comes. Some people have gone into long term remissions. I do not know of many. We must however maintain hope. The more physicians become aware of this disease, the more likely people will not go untreated and suffer.
About Our Expert:
Jeannie Snyder, R.N.
St. Joseph East Hospital