Hi, my name is Jane and I
was diagnosed in November 1997 as having "Interstitial Cystitis", commonly referred to as IC.
IC had been basically controlling my life for quite some time and finally getting that diagnoses seemed to lift a ton of bricks off of my shoulders at the time. There have been times when I felt that I couldn't go through another day with the pain and burning but somehow you find a way to get through the really bad days.
What is IC? It is a chronic inflammation of the bladder wall. IC is not like "common cystitis" in that it does not respond to conventional antibiotic
therapy. At this time the cause of IC is unknown as well as the cure.
Is there pain along with IC? You betcha! I have been doubled over in pain more times than I care to remember. Something as simple as walking can become totally intolerable. There is also the frequency of having to urinate, not because our bladders are full, but because our bladders are so raw, irritated and possibly full of ulcers that the smallest amount of urine cannot be tolerated.
SYMPTOMS: Frequency-day and/or night frequency. In some of the cases that are more severe, you may go up to 100 times a day. URGENCY: When you gotta go, you gotta go! Feelings of needing to go immediately. This can also be accompanied by pain, pressure and/or spasms. I figure that I've had this for at least 12 years at the time of my diagnoses. I went to countless doctors with complaints of feeling like I had an UTI or at times a kidney infection. They would take urine cultures which would come back negative. Even after explaining to them the amount of pain I was in they would tell me it was "all in my head, that nothing was wrong with my bladder". Finally, I was referred to see an Urologist who was knowledgeable of this disease. After ruling out an infection, he scheduled Bladder Distention surgery. Luckily this physician was also in to herbal remedies, crystals and even gave each and every patient a guardian angel pin to wear. It meant so much to have that recognition that I wasn't losing my mind!
So, back to the surgery that is done to accurately diagnose IC. This procedure is where they stretch the bladder to it's maximum by filling it with fluid under general anesthesia.
If IC is present they can usually inject medication into the bladder directly which will usually offer some relief from pain, not immediately, but usually you get relief within 24 to 48 hours IF it's going to work for you. Not all patients get relief from having a hydrodistention, and don't be surprised if you are in alot of pain when you wake up from the surgery. And above all, don't be afraid to ask for something for the pain either.....you definitely should NOT have to suffer any more than you already have. You're body definitely needs a break from the vicious pain cycle that IC can cause.
I also found out that I have Fibromyalgia,
which some doctors believe go hand in hand with IC. There is a lot more options for treatment now that wasn't available as little as two years ago. Following the IC Diet is a definite plus in managing this disease. Also, drink lots of fluids to keep your urine diluted. Do not think that if you don't drink that you will not have to go to the bathroom.
It just doesn't work that way. Not drinking will irritate your bladder more.
I honestly feel that the key to this whole thing is:
RESEARCH AND EDUCATION. Research will find the cause and cure, and
Education will inform our doctors on how to treat IC. It has not been
an easy road. I am thankful that I've had the support and love of my family. I truly hope and pray that each one of you suffering from this horrible disease will be as lucky as I have been in being blessed with support of the ones you love.
Thanks to all my IC family over at AOL, especially Catherine Simone and a HUGE THANK YOU to Linda Penland for doing my web page and then teaching me how to do the updates!
If you're considering or have been told you need to have your bladder removed because of IC, PLEASE read the updates below. The urinary diversion surgeries are NOT a quick fix and can actually cause you more problems.
UPDATES:
JULY 11,2000 - My former Uro did an Urostomy (Urinary Diversion Surgery) due to my bladder shrinking to less than 100 cc's. I was continually having problems with my bladder shutting down and I was having to cath myself often with a foley kit and leave it in for several days at a time. My only other option at this time was to have the Medtronic Interstim Implant, which at the time had not been FDA approved for pain control. The type of Urostomy I had done is called an "ileal conduit" which is where they cut a 6 to 8 inch portion of your ileal colon, and attach the ureters to one end and bring the other end of the colon up to the surface of your lower abdomen which is where you attach your urostomy pouches after that to collect the urine. I also chose at the time to have my bladder left in......just in case something went wrong, or a cure was found. Unfortunately I have since found out that to have this surgery reversed would not be as simple as what I was lead to believe when I had the surgery done. During my hospital stay of 8 days after having the Urostomy, I developed Giardia (which did not get diagnosed until a few months later) an intestinal parasite, due to the use of contaminated equipment used in the O.R.
MARCH 2001,
It's been almost eight months since the surgery and I still continue to suffer with G.I. problems from the surgery. I'm rarely able to keep any foods whatsoever in my system. I usually am doubled over with diarrhea within 20 minutes or less of eating ANYTHING. I've lost 60+ pounds since the surgery and continue to lose weight almost everyday. I was just diagnosed a few days ago with a severe kidney infection in my left kidney (down side to the Diversion surgery). While I'm not really having trouble with my stoma (where the urine now comes out) my G.I. tract is totally in uproar and my hopes are that the specialists at UNC Hospital will be able to find out what is actually going on. I'm due to see them soon and will be sure to come back and update this page for those interested as soon as I found out anything.
DECEMBER,2001- It's definitely been awhile since any updates and I appreciate all the emails requesting updated info. Here goes.....
Things were pretty touch and go for awhile. I really wasn't improving and the bladder pains were becoming unbearable and eventhough I had an Urostomy, I still had my internal bladder. I was seriously considering having my bladder removed, hoping it would get rid of some of this pain. I returned to my then Urologist and discussed this option and found out that it would take anywhere from 6 to 12 hours to do the surgery....YIKES! DEFINITELY NOT something I was prepared to do. So, I went to the pain clinic at UNC hospital and was seen by the head physician there. She informed me that there wasn't much left that could be tried on me but agreed that it was worth trying some different medications. On that note I was switched to Methadone for pain and eventually Neurontin also. At first Topamax was also prescribed but the side effects were too much for me to handle so it was stopped. I will say that this is the best I have felt in about 4 years. At first, I had tons of energy and the only way I could explain it was that I was assuming that my body was no longer having to work so hard to fight the pain and in return I had all this energy. I don't know if that is scientifically correct but it makes sense to me. Unfortunately, alot of the bladder spasms are returning but they aren't constant. However, when they do hit me they hit me like a freight train! They literally bring me to my knees when they happen and no amount of methadone can dull them.
That's about all that has happened as of yet. Again, thanks for the emails requesting updates. It really made me feel good to know that YOU wanted to know!
JANUARY 29, 2003; Due to my bladder shrinking to 60 cc's, always being infected and constantly bleeding I had my bladder removed on January 14th. The surgery went really well eventhough I had to have a transfusion the day after surgery. I'm really luckily that I have not experienced any phantom pain which was a concern. Actually, the only real pain I feel is where he removed my urethra. The Dr. stated that the vaginal area is extremely vascular thus resulting in alot of bleeding and being very tender. Other than that I feel alot better. It's only been 15 days so time will tell if this did the trick or not. I still have alot of other health problems to deal with but hopefully this surgery will have solved or lessened the load a bit.
Blessings to all and I pray you all have pain free days and nights.
UPDATE, JULY 2004: Unfortunately, I have been having alot of problems with the skin around my stoma, which is referred to as perstomal skin. Because the stoma was too short from the very beginning the urine leaks behind the pouches and is causing the skin to ulcerate. It's been 11 months now that I've had to deal with the ulcers on a daily basis. The long list of products I've been using only help for a short duration of time and have never been able to completely get rid of the ulcers. I've seen 4 nurses that specialize in ostomies and probably half a dozen doctors about this. Long-term, I'll have to have the stoma revised (which is a major ordeal). Short-term, I may end up having to have tubes put into both of my kidneys to divert the majority of the urine.
UPDATE, SEPTEMBER 2006: Well, it finally happened. I ended up seeing a Urologist at Duke Hospital and he agreed that not only did the stoma need to have a longer bud on it but it also needed to be moved. So, in November of 2004 I went in for the long surgery. I was very lucky that the surgeons were able to use the same piece of colon that had already been used. The surgery ended up taking almost 9 hours and I was told that half of that was spent trying to rid my abdomen of massive amounts of adhesions/scar tissue. When I was wheeled to my room 3 hours after surgery the surgeons came in and said they had some bad news. At this point I'm thinking, "okay, they found a tumor or something." They go on to tell me that an xray was taken prior to my leaving the OR and the radiologist saw that a surgical sponge had been left in me and they needed to go back in immediately to retrieve it. Here it is after midnight and they take me back down to the OR's for 2 more hours of surgery. What a nightmare!!! And it didn't end there either. About 2 months later I received a bill from the hospital for BOTH surgeries and while I was trying to clear up the matter with the hospital (they had informed me that my account was on hold while they were looking into it) they turned my account over to a collection agency. How's that for a kick in the pants?! The matter is finally cleared up, thanks to one of the local TV stations.
Now, back to the revision. . .unfortunately, the revision has not helped the ulcers that keep forming around my stoma. I have little skin left and what is there looks pretty scarred up. I don't know what is going to happen next. There is a Dr. here in N.C. that has successfully transplanted bladders into children by using their own cells to grow the bladders in a lab first and then transplanting them. He is supposed to be starting a trial with adults and I've signed up to be part of it but the company that is funding the trial doesn't want to do this surgery on ICers. I understand that there is a huge possibility that the IC would affect the new bladder but I'm running out of options and am afraid I'll get to the point where I'm running out of time. So, like the rest of the ICers out there I'll just have to wait and see.
PLEASE, if you or someone you know is even remotely considering having your bladder removed because of IC, research it and talk to other patients of the surgeon that is planning to do the surgery. If one part of the procedure is not done exactly right then you could end up with a horribly botched urinary diversion that is a total nightmare!
Feel free to email me if you have any questions or concerns.
