The Colon Club

This is more of a rant than a question...I'm coloretal cancer stage IIIb. Initial emergency colostomy, then went through 5 weeks of pelvic radiation with xeloda. The very last week of Radiation I thought I had a yeast infection, so I got the antibiotic. Then it started to feel like a UTI. I asked for antibiotics, but they insisted on a urinalysis. The sample after 48 hours showed no growth so the Doc comes back with "No Infection shown. I hope you are feeling better".

I am level 4/5 pain. Miserable level 8. Pain Controllable with Oscillocossinum and Motrin 600. I feel like someone is pulling on my bladder strings. Maybe my bladder is falling out of my vagina, or maybe my vagina is falling out. The pain is above my pubic bone and where the pee comes out. Maybe its in my vagina too. I am so sick of talking about my girl parts and my rear passage!! So, Its painful to pee, not burning, but pain in this place like its in the middle of nowhere. I seriously cannot point to a body part on the diagram, the place is nowhere. There is pain pressure when I stand up. I feel like I'm peeing on myself. Walking causes this pain. Sitting up causes this pain. Lying flat causes this pain. I feel like I need to tighten the pelvic muscles to be able to stop pee when I feel like I am going to pee on myself. My best position is in a nest of pillows slightly tilted to the side with a pillow under half my butt. This started the last three days of radiation, and has gotten worse with a fever up to 100 for two evenings, and it has since gotten slightly better but not completely tolerable.

I'm on my own here. The first day of radiation, I asked the Radiation Oncologist about vaginal stenosis. He said it rarely happens. Pffft. So now this pain and his reception...I asked about this pain three days to the end of Radiation, and he blew it off. I was nearly in the floor in pain, crying like a blubbering fool. Then went to the Hematology Onc who came back with the hope you are feeling better statement.

I'm ready to go to the Chinese medicine doc for help. I am on an Island.

My radiation oncologist have me 2% lidocaine gel. I would dab some up on vagina before urinating to numb the area. Otherwise it was like passing glass. It started a couple weeks before ending radiation and a couple after finishing. I think it's just the area so burned from radiation

Radiation can cause severe inflammation of the lining of the bladder and urethra. This would account for your intense pain. Picture a severe sunburn of the epitheal lining of your bladder and urethra. Ouch.
Karen

Sorry for your discomfort. I had lots of pain after my surgery, but not before. You have my sympathy re lack of sympathy/understanding on what radiation does to delicate pelvic tissue. My advise is to not give up with looking for answers. I know easier said than done, especially when in so much pain.

Peace, Kristi

Feel free to PM me.

I am level 4/5 pain. Miserable level 8. Pain Controllable with Oscillocossinum and Motrin 600. I feel like someone is pulling on my bladder strings. Maybe my bladder is falling out of my vagina, or maybe my vagina is falling out. The pain is above my pubic bone and where the pee comes out. Maybe its in my vagina too. I am so sick of talking about my girl parts and my rear passage!! So, Its painful to pee, not burning, but pain in this place like its in the middle of nowhere. I seriously cannot point to a body part on the diagram, the place is nowhere. There is pain pressure when I stand up. I feel like I'm peeing on myself. Walking causes this pain. Sitting up causes this pain. Lying flat causes this pain. I feel like I need to tighten the pelvic muscles to be able to stop pee when I feel like I am going to pee on myself. My best position is in a nest of pillows slightly tilted to the side with a pillow under half my butt. This started the last three days of radiation, and has gotten worse with a fever up to 100 for two evenings, and it has since gotten slightly better but not completely tolerable.

I'm on my own here.

I totally relate to your pain and exhaustion about talking about everything down south. I was going between Tylenol and ibuprofen for the last week of radiation and really the 3 weeks after. I found the only place I could sleep was in the bathtub, just added water as it cooled down. My friend gave me a cannibus cream with arnica, menthol which helped. I start wearing my husbands boxers shorts. Also found a cream called calmoseptine, zinc and menthol, which I rubbed on myweeping skin. I got a cushion used in wheelchair which allowed my to drive, sit for meal. I am sharing this not for sympathy but in the event something will stick for you. There is just so much they don't tell you or you can't prepare for.
There is some great pelvic floor exercises at core exercise solutions.com.
I finished radiation December 8th, can now wear boxers right side out guess seams don't bother me any more but lasted ten minutes in pants. Thank goodness for long skirts and Ugg boots.

You are in my thoughts!!
Susan

I also did soak in a tub a couple times a day, and the nurse suggested laying under or in front of fan to cool area. Being I went through radiation during the summer that was okay. My radiation oncologist also offered oxycodone but I told him I would just take Advil. The lidocaine really did help in numbing area before urinating.

Don't use Calmoseptine if you are still getting radiation. It's impossible to get off. Good luck and take care

Hi Caat,
I'm sorry you are in so much pain. I hope you can find relief.

My radiation nurses suggested over the counter pyridium to help with burning pain during urination.

They also suggested aquaphor and Vitamin A & E cream to put on around the clock, except not within two hours before radiation. The radiation will magnify the oils and any metals and make the burn 1000x worse.

I found it helpful to take a lot of baths, and apply little frozen globs of coconut oil or other creams. The numbing cold was a relief.

I would wear skirts and try to air out as much as possible. & I used a peri bottle to rinse and would aim a stream of water at the urethral opening when I would pee. That helped a little bit.

talk to you soon
Beth

I was not given any advice on putting anything on afterwards. Plenty of notes in waiting room for breast cancer radiation patients. The problem with salves is they say you should be salve free when receiving radiation. Try getting that stuff off - especially on delicate tissues. A bit of a catch-22. I've used vit E oil and jojoba oil. Easier to spread and it dissipates easier as well.

I also had burning when peeing after the radiation. Went to urologist and they gave me meds which turned out made matters worse. I think it's just a time thing.

Thinking of you,

Kristi

Hi there -
So sorry you are going through this pain! I, too, am going through the exact same thing right now and feel that my docs didn't do too good of a job of forewarning me about this side effect of the radiation. I just went in to see my radiation oncologist yesterday to address this very issue - here's what I've been told (hope it's not repetitive). The pain that I am having is due to the tissue breaking down along the vaginal walls (the term mucous was thrown out there) - the tissue is inflamed with some lesions. The solve (or temp fix) - sitz baths 2x's a day, using silver sulfadiazine cream (not OTC and not recommended if you are still undergoing radiation treatments) and the pain meds that they had prescribed. My husband just got through radiation treatment a month ago (yes, we got a double dose of cancer in our household!) and his docs advised him that the worst part of the treatment is the 2 weeks following when you finish radiation. That seemed to definitely be the case with him and I would say with me as well. So, in other words, after those two weeks are up these symptoms should dissipate.
Hope that helps!!

The worst part of radiation for me was the end. I was happy it was over, but like afaust, the pain continued for a few weeks afterward.

My Dr gave me a mixture of creams that included lidocaine. Also, an anti spasm medication, the equivalent of peridium in the US, but without the dye. Recently I had a bladder infection and threw up within 20 minutes of taking that medicine with the dye. It does not agree with me! But it might not bother you and is over the counter. And, the Peri bottle of water to use while peeing.

I understand your pain. I am sorry your doctors are not more helpful. To this day, I often have to go pee immediately when I see the toilet, or sometimes because of running water. I often wear the lightweight Poise pads for this issue. Some days I have the problem, others not. I find it helpful just to use the bathroom before I feel the need to pee. That seems most helpful.

Have you seen a urologist? It is possible that your bladder and or pelvis has been damaged by the radiation. Seek a specialist in these type of complications. Ask your radiologist for a referral too.

I also have an urgent bladder these days. I wear a pad when I'm working (as substitute teacher) because I usually pee a bit AFTER I've already peed, especially when sitting down afterwards. Try to make sure I get it all but sometimes I forget and sometimes... I also can get an urgent need to pee and need to get to a bathroom quickly. I'm sure my bladder/urethra have been damaged due to radiation. Went to urologist after surgery and whatever meds they gave me made things worse (felt like peeing glass) and went away after I went off meds.

Another one of the many costs of living.

Peace,

Kristi

So almost two weeks after Lap AR. Had a catheter briefly in hospital. I find that I pee once, sit a bit maybe 30 seconds, and pee more. Skin down through and around rectum is sore. Is this anyone else's experience?
S

Caat55 wrote:So almost two weeks after Lap AR. Had a catheter briefly in hospital. I find that I pee once, sit a bit maybe 30 seconds, and pee more. Skin down through and around rectum is sore. Is this anyone else's experience?
S

I had a moderate amount of pain after LAR and I determined that the vast majority was from the Ureter Stents and bladder pressure. The painkillers didn't really help - what helped with the latter was when they emptied the catheter bag but the stents were still a problem. Things got better after they removed them.

Stuff can happen in surgery. I don't think that I can have kids anymore unless some plumbing is reattached and I'm guessing that's not possible. Yes, the surgeon did cover reproductive risks with me before the surgery.