Severe urinary and bowel pain – seeking urgent guidance

[thakurrajesh34]

The patient (my father) has been treated for T1G3 bladder cancer with 9 cycles of BCG therapy. Post-treatment, he is experiencing the following complications:
1. Urinary Symptoms:
• Painful urination.
• Severe, unpredictable episodes of penile pain.
• Extremely frequent urination (every 2-3 minutes), disrupting sleep and causing significant discomfort.
2. Prostate Condition:
• Diagnosed with Grade 2 prostatomegaly almost 5-6 years ago-on regular medication), which may exacerbate urinary symptoms.
3. Hemorrhoids and Bowel Issues:
• Severe anal pain due to hemorrhoids.
• Infrequent bowel movements (every 2-3 days) accompanied by rectal pain.
Other observations:
• Pain episodes are unpredictable, with periods of no pain for up to 5 hours followed by intense pain lasting 2 hours.
• The bowel and urinary symptoms combined are causing significant distress and a reduced quality of life.

I am seeking advice on food and drinks that could ease urinary and bowel pain; any specific practices examples related to meal or hydration that could provide relief; any lifestyle adjustment to improve his quality of life.

Note: He has been a non-smoker and non-drinker throughout his life

[Nightingale]

Hello thakurrajesh 34,

Thank you for your post.  May I ask, have you or your dad reported all of the information you outlined to his urologist/oncologist?  I’m sorry I won’t be much help to you myself as I’ve not experienced even a fraction of what you’ve described.  My heart goes out to your dad.  I hope another member of the forum can chime in.

I should inform you that none of us are medical doctors.  What we share are our personal experiences or refer others who may have experienced something similar.  If you wish, I can check to see if we have a peer-to-peer support volunteer who may have experience with the symptoms your father is experiencing.  He can have a 1 on 1 conversation on the phone with this person.  Would you like me to check?

My Best,

[marysue]

Hi thakurrajesh  34:

I’m sorry to learn that your father has experienced so much trauma post BCG treatment.  I’m a 66 year old female but did experience some of what your father did.  It is not fun.  Symptoms will lessen over time once his treatments are finished but complete recovery can take a while.  During my last go around of BCG in late 2022 and early 2023, it took me a full year to get my bladder back to normal.

Nightingale is correct.  For medical issues you should be consulting with your father’s medical team as we are not doctors and can’t recommend any specific treatments.  However we can share personal experience.

Penile pain – there is a possibility that the cause of this is inflammation of the urethra from the BCG.  BCG can inflame both the bladder wall and the urethra. Being female, I obviously have a much shorter urethra but I did experience a lot of urethral pain back in 2022 when I had my last BCG treatments.  Every time I peed it felt like I was passing hot shards of glass. I won’t repeat what I said as I was going.  It’s not fit for print.

Hemorrhoids and  bowel issues:  I too had issues during BCG treatments and for a while post treatment.  My hemorrhoids really swelled up and I got really constipated from the BCG.  My stools were also very foul smelling.  Symptoms did abate after my treatments were finished.

I can’t comment on the prostate situation since I don’t have one.  That would be a good conversation to have with his doctor.

My suggestions are:

1) Drink lots and lots of water.  Yes, this will initially make him pee a lot but it does help reduce the inflammation.  It will also ease constipation.  He can drink the extra water during the day and taper off in the evening so that he is hopefully not getting up too many times during the night.  Experiment with the temperature of the water.  I found during treatment times that hot water appealed more than cold since I was dealing with a lot of chills.

2) Avoid any drinks and foods with caffeine in them. So that means caffeinated teas, coffee, cola drinks, and in my case I even had to avoid chocolate. Caffeine will aggravate the pain in the bladder and urethra.  BCG and caffeine are not friends.  If your father needs a hot drink I can personally recommend herbal teas like peppermint and chamomile.  They are bladder friendly and very hydrating.  Some people can tolerate green tea during BCG treatments and have said that it helps.  It was not the case for me.  As mentioned, I had to leave caffeine completely alone.  I have only recently been able to start drinking my favourite teas without issue.

3) Over the counter pain killers like Tylenol and Advil can help with bladder pain.  I recommend checking with his doctor about the correct dosage for him and which medication would be better. I was given permission to combine the two. For me 2 extra strength Tylenol killed the pain and an additional Advil seemed to reduce the inflammation. Failing that, ask his doctor about a prescription pain killer.  Same for a bladder that is overactive.  During my last go post surgery my bladder was so spastic I was peeing every few minutes.  My urologist prescribed Flomax, a guy’s prostate med for me.  It took a couple of weeks to work but it did reduce the spasms. I only needed that for the short term. Being female my urologist did not want me to use it for long term. Putting a hot water bottle or heating pad over the lower abdomen and groin area can also help with bladder pain.  Being female and having both bladder and urethral pain I changed up the position of the heating pad.  I would hold the pad on my lower abdomen for about 1/2 hour and then sit on it for about another 1/2 hour to relieve the urethral pain.  Being male, your father should be able to cover both with the heating pad.  Don’t let the pad get too hot.  Keep the temperature to a comfortable warmth.

4) For hemorrhoids; applying an ice pack to the swollen area can help.  Also using a cream like Anusol. It has an anesthetic in the gel which can help numb the pain. If he is constipated, check with his doctor if it would be okay for him to take something like Senokot S which is a senna based laxative and has an ingredient to soften hard stools.  Laxatives should only be used for the short term as your bowels can get lazy and grow dependent on them.

I would also recommend that he go for regular walks as able.  Walking stimulates the digestive system.  I also go for regular acupuncture treatments.  Many acupuncturists have training to do acupuncture treatments that reduce the side effects of cancer treatments, digestive issues and bladder pain.  My acupuncturist was and still is a godsend.  Acupuncture is non invasive and doesn’t conflict with western conventional cancer treatments.  That might be worth considering.  Some acupuncturists direct bill private insurance.  If your father doesn’t have private insurance coverage for acupuncture he can claim it as a medical expense on his income tax.

I hope that this information helps.  ((((HUGS))))

[Cdn]

I have suffered some of these side effects of the BCG having completed my last treatment last August and now on a six month schedule. These include burning or some mild pain during urination, penile pain especially around the glans, and prostate discomfort and mild pain. These were at their most intense immediately after the treatment and persisted for many weeks although to a diminishing degree. In the last month, I experienced itching in the prostate which I interpreted as healing. I have found that the BCG substantially affects the urethra from the bladder to the glans, and full recovery takes many weeks for me. I am now almost back to normal, a feeling I rarely had since early last year with the severe symptoms and effects of the treatment (TURBT and BCG).

[Author]

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