This post is very long. Sorry. But I have been asked to describe my journey, my experience.
So there you go: 2006, terrible stomach pains. A year later, I was diagnosed with Crohn’s disease. The medications are more or less effective, I insist to have the damaged part of the intestine removed. They cut 27cm and that’s it. The medicines then work well, I take care of my diet and in general, the crises are rare for about 7 years.
My doctor suspects IC, prescribes amitriptyline and suggests seeing an urologist.
The urologist makes me a cystoscopy and discovers 5 tumors in the bladder.
We scratch them and I have to do BCG instillations (liquid reservoir in the bladder that I have to keep an hour to reconstruct the protective layer in my bladder). Impossible, my bladder does not want to keep the liquid for more than 15 minutes and, in addition, probing is practically impossible considering the inflammation of meatus and urethra.
Cancers come back, I have a surgery, we try the instillations again, the tumors come back, we operate, we try the instillations again. 5 surgeries in 16 months.
Thereafter, every 2 months or so, a urinary tract infection, urgency, antibiotics then I feel better. But I litterally run the bathroom without stopping!
All the time, they tell me that bladder cancer does not cause pain. But I feel it! I pee 40 times a day. I get up 5 to 6 times at night. They prescribed me Elmiron and PréGabalin. Among all that, pyridium, oxybutynin, oxycodone, dilaudid, morphine, acetaminophen and I feel better.
I am learning a lot thanks to this web about food, stress, etc. You have helped me so much!
The crises in September 2018 are less frequent. But I still have cancer. After two years we thought about the stoma that I kinda accept little by little thanks to all the information I have on the subject.
The new urologist tells me: “Let’s remove it all! Well, okay… Ovaries, uterus, cervix, urethra, meatus, bladder.
Well done! October 4th, I leave the hospital. No pain, incredibly easy. I am not saying I have recovered 100%, I still have pins in my stomach: I have not really practiced with the bag yet as a nurse comes to check all this here at home.
But the greatest thing in all this: I no longer have cancer and even better, I have no more IC! Only that is like gold!
Well, let’s be honest, I’m not that sexy right now, but I tell myself that eventually over time I’ll dress accordingly. I connect myself to this bag at night when I go to bed. It’s not totally sexy either, but I think in the end, I really will not need it in the future. We shall see. I do not take any medicine anymore. I eat and drink everything I want (wine is so good!)
I will have a follow up next week. My catheters will be removed and the nurse will also come because I need help with my bag. And I say to myself that yes, maybe one day, I will pierce the bag in public or I will surely be ashamed on the beach or some other inconvenience. But I will continue to stay in paradise only because I no longer run to the bathroom and I do not have pain. So here is my testimony.
I’m not retiring from the Facebook group. If you have any questions, here I am. But I will may be a little less active. Now I have the possibility to have a life outside. A social life, I cannot wait to find a job. It’s as if my life had been paused for 3 years and someone just finally pressed “PLAY”.
Good luck girls and boys. I adore you. You have been my moral support.