No need to worry if i can do it anyone... - Living with a Stoma

Living with a Stoma

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No need to worry if i can do it anyone can hand on heart

smaller profile image

Nothing to worry about. I was 63 when i had a non reversible ileostomy and done great and now 70. Take things easy for around six weeks and do as told. don't over do things that's when problems occur. Same with regard to exercise etc. Eat little to start and build up food intake over a period of time. Drink stacks of clear fluids excluding tea/coffee/alcohol and aim for around two litres daily, Attend outpatients appointments and ask all the questions you want don't hesitate. You can also asked to have regular checks with a stoma nurse.

Best of luck, take care.


5 Replies

Hi hope u are in good health. I had the surgery now 4yrs. I can only say it was a mistake. Since then everything has gone wrong. I still have the pain as I need to go, but not that I change around 12 to 15 bags on everyday. So now I hard having the stoma, I'd preferred pain to this shit

kimmo profile image
kimmo in reply to Ssrk

I received an email from health unlocked with regard to replying to the original post, then I saw yours. I’m so sorry that you have had such an horrendous experience so far. I’m unsure whether you can access what I posted originally re my journey and subsequent ileostomy, but why on earth has no-one from the hospital advised you if you are changing bags at that rate daily? Isn’t the skin around your stoma inflamed and sore? Were you not allocated a stoma nurse, and access to one, after your initial surgery and subsequent admissions? If not, you have been terribly let down by the system. You don’t say in this post why or who advised to undergo surgery. Have you been referred to their or subsequent clinics since then? I still have the odd occasion when I have a blockage, but on the whole I am pain free although am still able to use the loo as normal on occasions! I sincerely hope you are not kept waiting too much longer before this awful situation is resolved x

smaller profile image
smaller in reply to kimmo

Blinking hell changing pouches up to fifthteen times a day isn't advisable it wont be doing your skin any good whatsoever. As Kimmo says your skin should be red raw and maybe even bruised below said skin? How the hell do you get that many Pouches daily. i get one daily plus five extra for mishaps which can happen. Im assigned 35 pouches per month and my GP will not prescribe more. Does your GP prescribe the pouches which must mean he/she dosen't know enough of a stoma patients needs? If you get sore around the actual stoma area then there is a powder called Orahesive a Dansac product available on script which you apply to the area.

Have you been appointed a Stoma Nurse that you can get in touch with or a Stoma Dep't which you can attend by making a phone call first or walk in?

Like Kimmo i get an occasional blockage and get it sorted out nothing serious dosen't worry me. so my i suggest get to your A/E dep't just turn up and explain your problems and want to see a Gastro Consultant or Stoma Person. I get the soreness sometimes but only when the pouch is top heavy and pulls on my skin if I've been unable to empty it. My last blockage Early hours boxing day 2016. I know this is a different matter but iv got Pancreas problems big times and my Wife has told me i throw myself up in the bed with pain, she rings an Ambulance and on two and blues im in A/E 25 mins later. Spend couple days and come home. So as said get to A/E call the ambulance to yourself and have a high pain level.

There is much we can tell you but want days to type out dos and don'ts. Don't' be afraid you cant be refused its your right.

Good Luck.


Ssrk profile image
Ssrk in reply to smaller

Hi thanks for replying, as u read the days I have daily. Not had any extra care or help. When I order they ask how come, it's become a same answer got so many leaks. Now I can't get enough dry towels needed. Only get 1 pack with 1 box. Even I cut them into strips, but still using more. Last time I have had to buy my own. Skin is very sore, when the bag leaks it's causing skin to bleed. I now fed up, doing that and still going through pain every night, it's as I have no stoma need to go toilet.

Ssrk profile image
Ssrk in reply to kimmo

Thankyou for kind words. I don't have any support from no-one. Now I can't get enough dry towels. Have to buy my own, although I explained why I need more. I even cut the towels into strips for I can get more. As I said I don't want to be changing as I do. No one has been in contact to help or help changes that might be beneficial. As I said on many occasions I can't keep doing this.

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