The Trouble With Bowels Is…

Anita May 1

I think we can all agree that this past year has been pants! We’ve all had our own issues with Covid-19 and the lockdowns. I have struggled with looking after my Muma, my health and making sure I had enough time and energy for my family.

I’ve had bowel issues for a while now, mostly due to pancreatic insufficiency, however, there have been ‘newer’ issues that seem to belong in the ‘radical cystectomy’ (RC) section.

As a woman, preparing to go through an RC, you will be informed that you may or may not have a full hysterectomy or a partial one. The surgeons won't know exactly which bits have to go until they are operating. You may also lose some of your vagina wall and possibly some other bits of your vagina in the process.

I had everything removed. My womb. My cervix. My ovaries. My bladder

During a recent MRI scan, they have noticed that my bowel has become stuck to my vagina wall. For months I have been telling my consultant that sometimes I feel a bulging, unpleasant feeling, in my vagina. I also have pains in my stomach and across my stomach before I go for a poop. These can go on for hours, on and off! It seems to have gotten worse since my food poisoning episode, earlier this year.

Sometimes I have no control of my bowels at all!

My Oncologist has advised me to speak to my Urologist, who has supported me with bladder cancer. My Urologist has recently sent me to see a Gasterentologist who told me to take Imodium (a medication for diarrhoea) on the days when my bowel issues were bad! During the food poisoning episode, I was told in no uncertain terms that I should not be taking anything other than my usual prescription meds. That was the second Gastroenterologist I had seen. My usual one told me to go away. His words were, “there is nothing more I can do for you.”

It seems no one is listening to me and worst of all no one wants to help me

The bowels, stabbing and cramping pains, get so bad that I am doubled over pain. It literally takes my breath away. This can go for hours; on and off. I get a heavy feeling in my tummy. It feels like the world is going to fall out of my vagina. I struggle to walk.

Then sometimes, I get relief. I actually want to empty my bowels but that relief is often short-lived. I do, at times, suffer from bad constipation followed quickly by a succession of diarrhoea – and yes, I do keep my fluids up.

At other times, I daren't leave home. It just seeps from me

In addition to all of this, I have pain. Ripping, searing pain, from what is ‘probably’ scar tissue and adhesions from endometriosis and the radical mastectomy. This isn't all the time, thankfully but along with my other autoimmune disorders, it is enough to impair my quality of life.

Yesterday was the worst day by far. I woke up needing to go to the toilet desperately. I waited till some of the cramps dispersed, and ran. The result was disappointing. This continued for all of the day.

At 7 pm, the pains in my stomach started. They feel like a round, stabbing pain, ebbing and subsiding, at two different points on my tummy. Then shooting pains begin. They go from left to right, bursting across my lower tummy.

I managed to get to the bathroom. I was there for 35 minutes and then it started. I began to gag and vomit. This I believe is due to the ‘vagus nerve’ being stimulated by the opened bowels. Eventually, I came downstairs and felt empty and done.

I am not sure who to turn to next so I have a phone consultation with my GP on the 11th of May. I am really hoping she knows what to do to help me in this awful predicament.

I just want my life back!

If you are suffering with new symptoms, please seek medical help. Here are some directions:

If you need help now, but it’s not an emergency

  • Call 111 or visit 111.nhs.uk
  • Speak to a Pharmacist for advice on medicines or common problems like coughs, colds and rashes
  • See a GP or Dentist

If you think it’s an emergency

If you have a question about your stoma that is not an emergency

  • Speak to your Stoma Care Nurse
  • Call S.T.A.R.S. (SecuriCare Telephone Advice and Response Service) on 0808 301 2414 and we can arrange for you to speak to a Stoma Care Nurse within one working day of your call 9am – 6pm, Monday to Friday.

"I just want my life back!” - @big_british

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by Anita Brown

Anita Brown

About the author

Hi I’m Anita Brown. Diagnosed with terminal small cell bladder cancer in April 2016. I've had palliative chemo and radiotherapy, and a radical cystectomy and urostomy in August 2017.

I've had problems with my bladder all my life, from incontinence, to kidney and bladder stones, and now cancer. I would like to share some of my experiences - follow me on Twitter.

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