DO NOT abandon hope if you have an 'os... - Living with a Stoma

Living with a Stoma

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DO NOT abandon hope if you have an 'ostomy.

sttickle1 profile image
7 Replies

Ulerative Colitis @ 15y > Ileostomy @ 19y - now aged 73y.

I was advised* that those who still had a rectal stump (& anus) have a much increased risk of CA.

My stump was removed @ 29y - There was no medical follow up about this risk (maybe there is now).

It is my hope that those with a rectal stump are now followed up for later surgery.

(I am content with my 'ostomy now I have 'fine tuned' my appliance over the last 54y [am I the oldest?]. I would not go back to 'nomal' even at the 'flick of a switch')

Retired NHS worker 40+y Medical Physics Tech.

* Prof. Irving - Hope Hosp. Salford. 1970. - (he removed my stump - God bless him!)

ps. Having an 'ostomy does NOT affect your sex life. Some worry about this.

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7 Replies
Scottiedottie profile image
Scottiedottie

Hi. Glad I found this group recently.  You have some similarities  with me.. I was diagnosed with Uc at 15. Ileostomy at 20, I'm now 60. Work for Nhs. As nurse. Now unable  to do physical hands on nursing but assess people for NHS funded care in nursing homes. Worked as disability Assessor for Capita for 2 years for PIP. Have lots of other health conditions,  including sleep apnoea and immune deficiency.  Also have osteoarthritis and just been diagnosed with inflammatory arthritis which is affecting my feet and hands. This is linked to ulcerative colitis,  and also have lung disease linked to it. The strangest thing is I am back on sulfalasine after 40+years for the arthritis this time.  How things have changed. ....have to have 2 weekly blood tests and close monitoring.   Yes it is true you can live a full life with a bag and other conditions.  I have travelled the world and done some amazing things. Not able to produce babies though...have 2 adopted sons. 

scottish-lady profile image
scottish-lady in reply to Scottiedottie

Hello Scottiedottie, a quick question if I may... You say you have lung disease linked to your UC... I have lung problems, not sure what it is, been on antibiotics etc, no joy and am an Illeostomist.... What lung issues are connected may I ask, just making sure that this may not be what is wrong with me that myself and the GP cannot solve...

Janey...

Scottiedottie profile image
Scottiedottie in reply to scottish-lady

Sorry taken long time to reply. It's a it complicated to explain. My RA is inflammatory arthritis. ..If you Google inflammatory arthritis and bowel disease it should give you info

scottish-lady profile image
scottish-lady in reply to Scottiedottie

Hello Hun, not the RA , you mentioned lung disease linked to your UC... I have the arthritis but am having lung problems too and it rang a bell when you said your lung problems being connected to your UC?

Janey xx

Scottiedottie profile image
Scottiedottie in reply to scottish-lady

Have you got rheumatoid arthritis? There is a link between all 3things

Hope this helps

consultantlive.com/pneumoni...

scottish-lady profile image
scottish-lady in reply to Scottiedottie

No hun I am riddled with oesteo arthritis though... My lung problem is a wheezing and coughing, I have done all the antibiotic courses and my GP has referred me to the hospital chest clinic, just waiting for appointment... It was sudden, the wheezing and coughing, out of the blue and had it now since November last year... Making me miserable Scottie, worse when I move about BUT can hit me even sitting still if I laugh etc...

I read the link you sent me and I am going to ask the chest clinic about it as it sounds like what is happening to me...

Thank you sweetheart for your advice, it is appreciated...

Janey xx

Scottiedottie profile image
Scottiedottie

The link between bowel disease chest arthritis is onky for rheumatoid arthritis which is completely different to osteoarthritis. I've never heard of link with osteoarthritis. Rheumatoid arthritis is a disease of the whole body system. Osteoarthritis is wear and tear of joints

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