Hi girls!
Ok so last year nov/Dec time, I was given the all clear (most of you know this after the long discussions we had on here and the huuuuuuuge help from you lovely ladies) now having tests for bone cancer so fingers crossed that they are wrong!
However I was told my toilet habits were due to the 3 month external and internal radiation therapy,and this would be my legacy. The problems were bloating watery stools and loss of sensation when I needed the bathroom accompanied by unbelievable painful cramps. However after all I had been through I could cope with it..... Well that's what I thought. The further on the year went last year the worse it got and (sorry gals) sometimes accompanied with a lot of blood and anything I eat makes me have this problem. I have completely changed my diet and have a steady intake of fluid. But now I am at the point I don't know what to do. Now not only do I carry spares I prefer to not go out as I can't go 2 minutes without needing the bathroom. Every type of food aggravates it, small portions upto the normal 3 meals a day. I am grateful to be here and that I am a survivor but now I'm a survivor unable to go anywhere without these intense cramps that when they happen I need to be on the toilet or I'm going to need a change of clothes.
Again all this has been explained to both my Gp and my oncologist. My Gp blames the radiation therapy and my oncologist says its my legacy from the treatment. I have had exploratory surgery which was supposed to be front and back exploratory however she looked at the back from the outside and decided there was no point in spite of the problems.
I don't know what to do now. I had trouble going out before this but now going out is impossible for me which is not ideal for my as I wanna get out there with my daughter and travel or just be able to go shopping with her instead of living on the toilet.
Someone tell me is this normal? Did anyone else have this? Did it get worse the more the year progressed. I intend to grill my oncologist next time I see him because this is not how it's supposed to be surely?
Sorry for the whinge and thanks if you reply and thanks for reading it
Either way Thank-you you wonderful ladies
Harleekwin
Hey HarleeKwin
So sorry to hear you're having such a hard time with your bowel/bladder. Did you just finish treatment in November 2-17? Because if so, it's very early days, and you have a good chance that things will improve.
My bowels were terrible for the first few months after radio, then got better, and now will have off days here or there, but not all the time. My bladder has constantly played up though, and is so dependent on what I eat or drink (I have had to cut out caffeine, chilli and alcohol, carbonated drinks boo). I also carry spares because I just cannot make it sometimes (to wee), it is terrible but I am going to speak to my consultant about seeing a urologist... could you do the same?
Also, could you try immodium for your bowels? I used that in the first few months after treatment and it really helped.
Also, I am going to cross fingers and toes for you for your upcoming scans! Why do they think you could have bone cancer? when do you find out hon?
Rosie xx
Hi Rosie!
Wow what a speedy reply! Thank you for reading my post!
Im in that place where it feels like it's only me at the moment.
I finished my treatment in mid February 2017. I was diagnosed in November 2016stage 2b squamous cell carcinoma which was too big to operate on and I was unable to have chemo due to other medical problems. The cancer had spread to lymph nodes but was given the all clear last year almost exactly a year to the day of diagnosis. After a year I thought it would have calmed down by now, even if it was just slightly.
As for the bone cancer. I woke up on Xmas day (of all days) unable to move family members had to come to my house to get me out of my bed and dress me as I could not move I have a constant cramp on my lower left buttock and my inner top left thigh that is there as a constant. On the 28th of December I saw my Gp who requested an urgent scan as he suspects that it has spread and is in my bones now.... (wasn't happy to hear that bit even more annoyed he said it in front of my daughter! No one was able to help me with looking after her that day) :(
So now my scan is tomorrow and the long agonising wait to hear the results with flash backs of treatment scaring the crap out of me.
God I'm a whinge!
What about you Rosie how are things?
My bladder and bowels act up as well, and docs say from radiation. Immodium helped to a degree, but I haven't quite figured out what else makes it worse. Stress, foods...
Bladder constantly acting up. I have trouble sleeping because I constantly wake to use the bathroom. My doctor said using a dilator would help with that and she also referred me to a urinary gynecologist, so that is my next step. Maybe those are options?
Hoping your scans are OK.
I am 11 years out and have daily bowel and bladder issues. I live in the US so not sure how helpful this will be, but this is what I've done to reduce the issues. Within the first 18 months after treatment I had similar bladder and bowel issues, especially around not knowing when I had to go, or it came on so quickly I didn't have time to get to a bathroom. My urogyn suggested medtronic interstims, one on each side, to help control my bladder. It isn't perfect, but it definitely helps reduce the urgency. This last fall I also had botox bladder injections. Worked really well but downside is you need to have the injections about every 4 months. I wear pads every day. Bowel issues didn't really start for me until about 7 years out, but now it's daily. I take 2 imodium every other day to manage the diarrhea. Suspect I will need to do this the rest of my life. I am unable to tolerate certain foods like salads, brussel sprouts, beans, etc. so try and stay away from any "offending" foods.
Wishing you the very best in your recovery efforts. It is a tough road but you are not alone.
