End Colostomy

[Zigoin]

So it looks like endometrial cancer and subsequent brachytherapy resulting in radiation proctitis in my anal canal is going to end up in an end colostomy. Does anyone here have experience of dealing with this please?

[Memagh]

Hi Zigoin,I don't have any experience of colostomies but I just wondered whether anyone has mentioned Hyperbaric Oxygen Therapy to you. I finished treatment 16 months ago and have been diagnosed with a large area of damage to my sigmoid colon, radiation proctitis and extensive bladder damage. I'm currently waiting for my gastroenteroligist to take my case to MDT to see if I'm a suitable candidate for Hyperbaric. Hopefully someone comes along soon with more information for you.

x Maria

[Blue_Hawaii]

I’m sorry you having to go through thisSending you a big hug 🤗

[Massmama76]

Hi there! I have an end ileostomy because of radiation enteritis to my small bowel. The ostomy is one of the best decisions I’ve made- mostly because I can now eat and I don’t have obstructions constantly.. the one downside is that I require tpn and fluids because I don’t really absorb much. But quality of life is better than before. Feel free to ask me any ostomy questions.

[accidentalcarnivore in reply to Massmama76]

Hello, I am interested in your experience with the surgery. How long ago was it? were there any complications? How does tpn and fluids work and how does that effect life. Sorry if too inquisitive, but i have avoided surgery as a solution for 10 years and have been suffering lifestyle for sure!

[Massmama76 in reply to accidentalcarnivore]

Of course! Not too inquisitive at all!! My surgery was 2.5 years ago at Georgetown in Washington DC. No complications. They have much experience with radiation damage. My doctors in Boston weren’t comfortable operating on my intestines because they were so damaged. I was already on tpn when I had the ostomy surgery because of the damage- so even if you have an ostomy you very well may not need to be on fluids or tpn. I have a port that is constantly accessed ( with a needle) so I can give myself fluids and tpn at home. It’s a lot of work but worth it.My ostomy doesn’t smell, it’s discrete and honestly doesn’t get in the way of things.

[accidentalcarnivore]

Thank you! Bless you for your courage.

[SpaghettiBetty]

Hi Zigoin I have an end colostomy due to PRD. I needed to have quite a large portion of my bowel removed due to the damage so this is something worth asking about as it can affect how your ostomy functions if you are having parts of your bowel removed.

I had hyperbaric oxygen therapy before my surgery (and could had had it afterwards if needed) to help with the healing process.

Like Massmama76 I have also had TPN but I only had it for about a year. I have what’s called ‘short bowel syndrome’ as I only have 180cm of small bowel remaining.

I have to have B12 injections regularly as well as take folate and vitamin D supplements due to the short bowel but otherwise I’m fine and have no issues with it.

I had chronic diarrhoea before I had surgery so getting my colostomy has been incredibly liberating as I was practically housebound before.

Happy to ask any questions you might have

[Zigoin in reply to SpaghettiBetty]

Thanks SpagettiBetty. The problem is just inside the anus, the site of a failed polyp removal sitting right amid the patch of RP. Seems such a shame just for a badly positioned polyp. I'd like to stay in touch with you if possible, as I progress and once I have the final decision.

[SpaghettiBetty in reply to Zigoin]

Of course not a problem! Happy to answer any questions you may have. Sounds like you’re not likely to have any bowel removed (but always worth asking your consultant). I would imagine you will have more options available to you regarding management, such as irrigation.

[Scotknit]

I have had a colostomy due to a rectal cancer operation 9 months ago. It was a shock and due to Covid,was told about it one week and had the op the next. Due to lockdown and operation after-effects I have been mostly confined to home. So i have not had to deal with coping with it outside. Being at home,it is easy to deal with physically but it is harder to cope with the idea that I am stuck with it for the rest of my life. It has become a routine task I have to do,as there is no other choice.