[Guest]

I'm in desperate need of some help!!!!!


PLEASE TAKE THE TIME TO READ THIS:

A day in the life of living in Kara R’s body. I get up at 6:00am for work, drag myself out of bed because I was up all night going to the bathroom every hour! I get myself ready to go and set out for my hour commute. Every bump I hit on the road is like a punch in the bladder. It feels like there is a fire rolling around and around with no escape. The fire is heavy like a bowling ball that is trying to come out of my urethra. It’s heavy and it burns!!!!!!!! It’s hard to get out of the car after all of that. I drag myself into work and pray that today will be the day that will change my life because by some hope of a miracle, maybe this silent destroyer will decide to leave me in peace and drive someone else insane. Not an hour later, what they call “urgency”, (I call it SEVERE PAIN!) creeps back between my legs. Maybe if I just hold it, it will go away, so I try to hold it a little longer, the phone rings and someone needs my help. Before I know it, I’m running to the bathroom as fast as I can make it because I am about to throw up. As soon as I go, I get some short lived relief. I go back to my desk to try and get into my work, but the next hour has approached and I repeat the whole cycle. My co-workers are wondering where I am when the phone is ringing and students are lined up at my desk to fill out paper work. I tired to keep this a secret for so long. Eventually they had to know the truth.
On a good day I will have had 8 trips to the bathroom. On a BAD DAY try over 80!!!!!!!!!!!!!!!!!! That’s when I decided I needed help from an Interstitial Cystitis Specialist. We tried several medications. This is what happened: Dicyclomine, Ditropan, Ditropan XL, Detrol, Detrol LA, Pyridium, Pyridium Plus, Levsin, Nortriptyline, and over 62.5mg of Elavil. These drugs all caused this rip roaring nightmare they call retention, I call it HELL, like ripping all of your fingernails off, slowly. It starts out with that urgency, I try to go to the bathroom to relieve it BUT……….I CAN’T GO………….I CAN’T GO AND I’M IN PAIN!!!! So, at work, I go back to my desk and try to work again, only, I can’t think because the pain gets worse and worse and worse. I try to go every few minutes but nothing will come out. Minute by minute I grow more and more uneasy, then I have to tell my work I am leaving because I can’t go to the bathroom. They all look at me like I’m insane. “But you don’t look sick?” My next stop is either the Emergency room or my doctor’s office to get catheterized. I’ve tried to do this myself but it hurts too much! My urethra is always raw and sensitive even to the slightest touch. It feels like I’m shoving a knife up my urethra, so I leave it to the professionals. The pain is relieved while the catheter is in long enough to get those medications out of my system, but then we are back to square one a few days later. I try to go back to work and do my job but it’s damn hard when I’m haunted by this disease constantly.
I try a surgery called the Interstim. I miss 3 weeks of work and still feel no better. It takes 3 months before I notice a difference in my trips to the bathroom. With this machine, I can make it for 2 hours at work and 2-5 hours at home (ONLY IF I DON’T DRINK ANYTHING!). The Interstim is not consistent. One day I can have an “ok” day and the next day I can fall on my face. The Interstim does nothing for the days when I am in severe pain or retention. I can’t drink anything, even with the Interstim because it means more trips to the bathroom, every 10 minutes! I can’t sit, stand, drive, or engage in any physical activity for long periods of time because my lower back, legs, bladder, abdomen, urethra, and bladder get so sore.
The pain and retention, are still there and I’m still getting up 4-6 times a night. So I try some more medications. Elmiron, Cardura, Prelief, Celebrex, Tagamet, Claritin, Vistaril, Trazodone, Xanax, Imiprimine, Nortriptyline, Ibuprofen, Oxycodone, Hydrocodone, Hydromorphone, Meperidine, and Neurontin. These all cause horrible side effects such as severe depression itching, mania, urgency/frequency and or retention (3 of which are THE WORST SIDE EFFECTS) This leads to SEVERE PAIN! Every time my doctor hands me a new prescription, I get excited and hopeful. Maybe this will be the one. The excitement continues until I have tried the new pill. Only to realize that for the 48th time, this medication isn’t the one. My bladder takes the side effects by responding with urgency, frequency, retention, pain, or all 4 at once! Then the sadness, frustration, and anger set in, until the next appointment. My life revolves around my doctors and what their next plan will be.
By the time I get home from work, I am so exhausted and in so much pain, I can barely make it up the stairs to my apartment. After I get home, I eat dinner and go to bed at 6:30-7:00 because I know that I’ll have to get up early, with no sleep, and do this all over again the next day. My husband never sees me because on my days off, all I do is sleep. It’s even hard to sleep because I’m in pain while I’m sleeping. My dreams consist of throwing up, catheters, and toilets.
My work has suffered enough to cause verbal warnings. I keep trying new medications in hopes that they will make me feel better, so I can make it to work. Every single medication I take seems to tear the bladder apart which causes me to miss more work. My job has warned me that if I take any more time off of work, that they may have to let me go but then I can’t pay for the medical attention I need in order to get better, in order to work! My Husband’s company downsized which means he is now on unemployment and frantically searching for another job. My plan was to join his health insurance in April so that I could go to part-time work. But in order to keep my health insurance I have to work full-time. I’m losing my mind! I’m not sleeping, not eating well. I’ve been working with a psychiatric nurse specialist to find a medication that I could take for my depression and anxiety but we could not find one that didn’t hurt my bladder. I desperately need time to heal, physically and just as important mentally. I’m losing all hope. My Husband’s job loss has made this tremendously, more difficult. I can’t handle this anymore!
This disease has been so hard on me. I was planning on continuing my education to get a Masters Degree in Psychology. It has been my dream for many years, to become a Junior/High School Psychologist. I was barely able to finish my last semester. I wouldn’t even think about trying to go back while trying to battle this horrible disease. I can’t imagine missing a class. I was a 4.0 college student.
I have no life. My friends don’t understand what is going on. They tell me that I am no longer fun to hang out with anymore because I can’t go out and do anything because I don’t know how my bladder will react. I miss my social life. I miss dancing, and staying out until 3:00 in the morning on a Saturday night! I miss meeting new people. I miss my spontaneity. Sexual intercourse is out of the question because it’s too painful and I spend the next 2 days on the toilet, trying to relieve the pain it has caused. I’ve tried creams for it but they work enough for me to want to have sex on a regular basis. I miss having sex. I miss cuddling with my Husband but I am afraid that if I do cuddle, that it might lead to sex and I don’t want to disappoint him by turning away from it. He avoids me and I avoid him. Our talk consists mainly of IC and what we else we can do to try and make living with it a little more comfortable.
I went to 2 pain management specialists. One was in Marlborough, and one was at The New England Medical Center. They both said there was nothing they could do for me but to try nerve blocks. I tried a lumbar sympathetic block, and a lumbar epidural block. Neither one of them did anything to help release the pain. We talked about a back nerve stimulator but he felt that it wouldn’t help because it was basically the same thing as my Interstim. We talked about a pain pump but he felt that it would be risky because of my sensitivity to medications.

I keep wishing and hoping that my doctors and I can work together to find something that will relieve the retention, urgency, frequency, and pain, all at once. I’d also like to feel a little more “sane” but we can’t find anything that does not hurt the bladder. I feel like a horrible, nagging, patient. I feel like I am a nuisance to the office. No one wants to be that “psycho”patient. I have failed every medication and every surgery. I can’t even imagine making it from 25-30 years old because I feel like I am 90 already. This is no way to live at 25.





THIS IS WHERE MY QUESTION COMES IN:

3 MONTHS LATER

My bladder pain, urgency, frequency, and retention is 100% relieved by having the indwelling Foley Catheter in. For the past 3 months while wearing it, I have been most grateful of having the luxury of no pain, no urgency, no frequency, and no retention. It’s been life changing, not having to run to the bathroom a million times a day, in pain!
For the first time in years I have been able to sleep 8 hours with out moving and without pain! My body feels at peace for once. I’ve been able to drink and eat everything I want to. It’s been a nice rest. Is there something we can do to make it possible for me to feel this way all of the time, not just when the catheter is in? I don't want a bag hanging out of me for the rest of my life. I want to keep it in forever but it’s so limiting and unattractive at 25 years of age.




My History is on the below:

Currently Taking:

Elavil-50mg at bedtime for pain and sleep, Buspar-30mg for anxiety at bedtime, Propranolol-20mg a day for anxiety Alesse-BCP (take this every day so I don’t have to get any more periods-too painful with the IC), Neurontin-300mg every 6 hours for depression BUT IT CAUSES SEVERE URGENCY

(THESE ALL CAUSE SEVERE RETENTION=SEVEREPAIN)

Dicyclomine Ditropan Ditropan XL Detrol Detrol LA Pyridium Pyridum Plus Levsin Nortriptyline over 62.5 mg of Elavil

Other Medications tried that had too many side effects or just didn't work:

Elmiron, Cysta-Q, L-Arginine, Aloe-Vera, Cardura -racing heart, DMSO, Prelief -urgency and frequency Vioxx Celebrex Tagamet Claritin Vistaril -severe depression Trazodone - severe depression Xanax - severe depression Imipramine - severe urgency and frequency Nortriptyline - retention, depression, anger Ibuprofen- itching and mania Oxycodone- itching and mania Hydrocodone- itching and mania Hydromorphone-itching and mania
Meperidine- itching and mania Neurontin urgency and frequency Wellbutrin-panic attacks and agitation, Celexa-myoclonic seizures, Effexor-myoclonic seizures Depkote-severe heartburn

Procedures done:

Cystoscopies, Biopsies, Hydrodistentions, IVP’s, DMSO, Bladder Scans, X-Rays, Laparoscopy, Interstim Trial, Interstim Sugery, Lumbar Sympathetic Block, Lumbar Epidural Block, Urethral Dilatations, Stricture Surgery, Massage, Acupuncture Allergy Elimination Treatments

[Guest]

Some cases of IC can be debilitating as you have described. We do remove bladders if we have exhausted all other approaches, but such surgery is not always a total success.
Foley catheters or supra pubic tubes can produce short-term relief, but are not often a good long-term plan.

[quote] I'm in desperate need of some help. ... [/quote]

[Guest]

Kara , My name is Andy and I am a 29 year old male who is suffering like you, I used to be outgoing and optimistic. This is the hardest thing in the world to go through. My life is ruined as well. I try with everything I have ,just to get up in the morning. I hope things some how get better for you. I understand your pain. It is no way to live. Try to hang in there , maybe there will be something to help soon. Just wanted you to know that there are others struggling everyday to exist. Good luck. Sincerley Andy
[quote] Some cases of IC can be debilitating as you have described. We do remove bladders if we have exhausted all other approaches, but such surgery is not always a total success... [/quote]

[OABandIC]

hi
im 14 and my life is ruined too
im going back to school soon and i really don't know what ill do
my grades amazingly didn't suffer last year, but its gotten worse
(a lot) over the summer and i bet ill miss lots of school this year...
i really want my bladder to be taken out, but im too young. my goal is for my 50th birthday
making a game out of going to the bathroom helps- see how long you can last, but dont go too long or it will be worse after :)

[UroDoc]

Usually the pain comes back even if you have your bladder removed, so it is not recommended. Have you tried Interstim

[drwenski]

I am so sorry to read about the misery you have been in. I too have IC and your days and nights sounded so much like my own before I finally got relief in the form of a supra pubic catheter.This is a catheter that can be inserted in the doctors office surgically.It is different than an indwelling catheter in the sense that it is inserted through a stab wound through the abdomen directly into the bladder.I won't go into detail about that now,only if you want more info.

A little about myself: I was diagnosed 8 years ago with interstitial cystitis after about 3 years of being misdiagnosed.This was particularly frustrating to me in that I am a registered nurse,for 25 years now and work on a medical/surgical unit.No matter how I tried to explain my misery the doctors quickly kept saying I had a urinary infection and I was treated with antibiotics over and over with some relief at times.Finally,6 years ago I called my urologist at home and told him I couldn't go on like this and he did a cystoscopy in the office the next day! Finally a definite diagnosis,I knew what I was up against.Sad to say that doctors really are poorly educated as to how dibilitating this disease can be.

Like you I was getting up at least 8 to 10 times a night to urinate.My days were filled with constant worry about staying close to a bathroom.I do not know how I managed to work as long as I did before getting the suprapubic catheter.The fastest way to drive a person to a psychotic state is to deprive them of their sleep.I was seriously contemplating suicide because I didn't know how long I could go on like this.My bladder pain and problems were always front and center in my mind.Going to my grandsons little league games were sheer agony with constant trips to the bathroom and hoping all the way there,the line would be short.Even watching tv programs I would find myself thinking that I couldn't do what ever it was the actors were doing because of my intimate involvement with having to be near a toilet.

I tried all the conventional treatments,bladder instillations of heparin and DMSO,elmiron for 18 months (all that happened with that was hair loss)ditropan and detrol (dry mouth was all that accomplished) long term antibiotic treatment and bladder retraining.Nothing helped and I was in fear if losing my job.I kept researching online to only come to the conclusion that IC is truly a poorly understood disease that is frequently misdiagnosed and/or underdiagnosed!

One day I was caring for a patient with multiple sclerosis and she had a superpubic catheter put in her bladder to increase her quality of life.She said she it had gotten to the point where she knew where every bathroom was in our town.Going out to dinner had become a nightmare of going to the bathroom 3 times during a meal and manuvering her wheelchair even in handicap bathrooms was more than a challenge.

I knew from that moment...that was what I needed and after 2 weeks of badgering my urologist he finally agreed to put one in me.He was quick to state it wouldn't help me and that cystectomy (removal of the bladder) was the standard treatment to those not responding to the current therapies.Nothing he had done so far had helped so what did I have to lose.June 12,2001 is the day I got my life back.He put the catheter in at 10 am and I spent the day shopping to my hearts content and got the first nights sleep of 8 straight hours without interruption in over 3 years or more.I have had the SP catheter for over 6 years,I change it myself once a month and I have never had another UTI since having the catheter.I have no pain and I am able to work and travel again.The only concession I had to make was to rethink my wardrobe but that is a small compromise to make.

I would suggest to any of you out there suffering from this to give it some consideration when all else fails. Removing your bladder should be a last ditch solution! Please write me with any questions you might have.

[drwenski]

Andy,please read my reply to Kara. I feel for you.Only those of us with this truly understand the misery of IC>

[drwenski]

Why do you say the suprapubic catheter is not a good option for the long term? I have had mine for 6 years now without on infection. It saved my life literally as I was nearly suicidal from sleep deprivation.I am able to continue working,travel and attend sporting events whereas before the catheter I was becoming to be house bound.Doctors truly do not understand how having to pee(painfully I will add) every 15 to 20 minutes night and day is a quality of life issue.

[karajo07]

Kara,

Hello my name is Kara and I am 23 and live in Oklahoma. I was diagnosed with IC at 21. I was so excited to read your blog. I feel the exact way you do. From the moment I wake up to the point of trying to go to sleep but not able to. my e-mail address is [moderator note: e-mail address has been removed] I would love to talk to you about having IC. Please let me know if you would like to talk about this horrible desease. It would be nice to hear your story.

Kara

[tobybabs70]

Kara R:
I read your post with tears in my eyes. Your day is so much like mine! The severe pain and urgency are often too much to bare. There have been times I have even considered suicide when I am at my lowest. Cathaters only cause me more pain and irritation. Medication has not worked for me at this time. I have only recently been diagnosed with IC after 4 years of mis-diagnosis and multiple surgeries. I too do not go out anymore. Even when I am able to make it to work, I do not spend time socializng or participating in the social functions offered at work becuase I am always in pain. My coworkers all know and are always asking me how I am feeling. I love that they care, but hate having to recall it everyday time after time. Then you get the typical: "you can't live like this. What are they going to do for you?" I want to scream "Nothing! THIS IS MY LIFE!" I know people say these things becaue they care, but I get so frustrted. I am depressed, mad, and run down. My family says "I know it is tough but you have to learn to live with it" Live with it...Live with it....AAAHHH!

I was very reluctant to join an online group, but knowing there are other people like me is somewhat helpful. At least I don't feel like I am crazy anymore. I hope that we can be comfort to each other through email or this group. Please know you are not alone! Not that that is going to help alleviate your pain or suffering, but hopefully it can help in some way. Please hang in there!
Sincerely,
Barbara-Ann