UKC

Hiya peeps I was wondering if anyone has experience of temporary or permanent ileostomy and their experience with a stoma? I don't mind if anyone would like to email me privately, I know its a subject that can be quite personal to a lot of people. Thanks!

Kirstin

In reply to tattoo2005:

Hey Kirstin

I'm a physio, currently working on the surgical wards at present, and see a lot of women come through for surgeries such as this, and I find that it is quite a shock at first to many of the patients, but that they soon adjust to the stoma. There is always the option to reverse the stoma in the future if able (depends on the surgical technique)

I obviously can't speak from personal experience, but hope this helps with whatever your looking for....!

Feel free to email me if you need
Thanks
Tom

In reply to gingerwolf:

Hiya Tom, thank you for your reply and I have sent you some mail.


Kirstin

In reply to tattoo2005:

my friend had a temporary pouch last year, it took him out of his normal exercise of cycling and climbing but soon after it was reversed he was back to normal and now happily shows his battle scar.

He kept a positive mindframe and made as many jokes about it as possible as well as laughing along when we took the mickey.

I looked in to the possibility of having one myself at one point but thankfully didnt need it. I had prepared myself for the strangeness of having a little piece of bowel protruding and a bag taped to my side. From my understanding they are initially prone to problems but settle fairly well after.
The main issue you may face is correct hydration, although again given time the body adaps and absorbs liquid better

In reply to owena:

Hiya Owena, thanks for your reply and the helpful information; I go through a total colectomy and temporary ileostomy in two days due to ulcerative colitis that has never gone into remission; surgery is the last option and I just wondered about a temporary stoma etc. I will be having takedown surgery about 6 months after my initial one on Thursday and have a J pouch. I know that there can be problems with this and sometimes people have to revert back to a permanent ileostomy but I'm hoping my surgery is all successful, fingers crossed. I am glad you are doing well and life has settled down for you, and who knows, I may decide not to have further surgery in the future, I'll see how it all goes!!

In reply to tattoo2005:
I feel for you there as UC has been my problem but thank (insert deity here) mine has settled after 8 years!

Youll definately have the support of a nutritionist as your diet is going to change quite a bit initially, Id suggest avoiding milk / dairy products also.

Edit - Actually for me I believe its stopping having all milk products thats made the difference, although I know other UC sufferers who dont have any problems with milk. I know its probably too late for you to try it now though if you only have 2 days left. All the best and good luck.

In reply to tattoo2005:

I can't offer advice, but posting just to wish you well with the op and all that comes after.

Beth
(Crohnie)

In reply to beth:

That is a lovely message Beth and thank you very much, its very nice nice of you. I hope you have a lovely Christmas and best wishes for 2014.

Kirstin
X

In reply to owena:

Heya Owena, yes I did try stopping different foods but nothing worked and I have a low fibre diet to look forward to for a wee while but its not as bad as I thought, I can still eat lots of the foods that I like AND enjoy a glass of red wine as well lol! I am glad to hear that yours settled down, I wish I had been so lucky but after 2 years of symptoms and no remission even after having Infliximab infusions my Consultant and I had to admit defeat and he passed my care over to the surgeons. I am sure the Prof will take good care of me on Thursday and it will be nice to feel "normal" again instead of constantly feeling unwell and all the other things that go along with UC, you know what I mean!!! Kirstin X

In reply to tattoo2005:

Hey Kirstin

No problem, thanks for the email. Shame that your surgery is on Thurs, fingers crossed all goes to plan and they get you out in time for Christmas.
Hopefully, being relatively fit and active will aid your speedy recovery!

Good luck, I'm sure all will be fine!

Tom

In reply to gingerwolf:

Thanks Tom, its very much appreciated! If I am still in on Christmas Day then I will just have to have a belated celebration when I get out lol! I wish you a very merry Christmas too and best wishes for 2014!!

Kirstin
X

In reply to tattoo2005:

Hi Kirsten
11 years ago my wife had surgery consisting of.
1)Bowel removed and sent to the lab, permanent storma formed due to not knowing which way the bowel tests were going to go.
Result were positive ulcerative colitis, meaning J Pouch.
2) 3 month later operation two, a temporary stoma formed and a J Pouch formed.
3) 3 month later after J Pouch healed it was tested and functioning, thus storma reversed, ie plumbed back in.

11 years on J Pouch still working.
She is a member of the Ileostomy Association and a trained IA Visitor.

Wishing you the best
Health
Mike

In reply to mikehike:


Hiya Mike, thanks for your message, it all sounds extremely positive! I was diagnosed with UC just over a year ago but have had symptoms for about 3 years which gradually got worse as time wore on. I will be having J pouch surgery but just want to get the first part over and done with as my body is a bit exhausted so the surgeon didn't want to do it all at once. I hope your wife stays fit and healthy; I hope I have the same success as she did. Thank you so much for your best wishes, they are very much appreciated; its all a bit scary!

Kirstin
X

In reply to tattoo2005:

A couple of tips.
Some medications come in different forms like capsule or tablet. The plastic capsules can pass straight though as if thy were designed to be absorbed in the large bowel. Some chemists just hand out what benefits themselves as they know no better of the patients condition.

My wife has recently gave up on boots the chemist after 11 years mixed service, final straw was being advised required tablet availability was ending and was going to be capsule or medicine. She changed to Superdrug who stock a different brand of the tablet. No queuing either.

Medications can come with sugar and caffeine, these may be undesirable so check the ingredients.

This may save you money long term
http://www.nhsbsa.nhs.uk/1127.aspx

Mike

In reply to mikehike:

Kirstin/Mike,

If you have a permanent stoma you qualify for free prescriptions. Temporary ones do not qualify, however if there is a chance that it might be permanent your GP may be willing to sign anyway.

regards

In reply to mikehike:

Hiya Mike, thanks for the tip. I'm not sure what medications I will be getting when I leave hospital but I will certainly ask questions and avoid caffeine as well, thank you for the link!

Kirstin
X

In reply to ScaredShitless:

Hiya SS, we get free prescriptions here in Scotland and I would assume that stoma accessories would be in that category? Mine will be temporary as I will be having J pouch surgery in about 5 months time, Round 2!!

Kirstin
X

In reply to tattoo2005:

IA Support Highlands
Highland IA
http://www.iasupport.org/regions/scotland

Local IA group meetings can be handy for meeting with the local storma nurses who can show/demonstrate the different alternative stoma products, 'I wish I knew about that product when I had a temporary storma'

Mike

In reply to mikehike:

Thank you Mike, its good to know all of these things as I have found, so far, that there is not a huge amount of information passed on to patients about these different organisations. I have met some people on FB who have had the same type of surgery and we are going to meet up for coffee after I come out of hospital; a couple of them work in the hospital as do I so it will be good to share experiences. Thanks again for all your help and information, I'll let you know how it goes!! Xx

In reply to tattoo2005:

Happy to give or arrange personal advice direct via Diploma of Mountain Medicine trained doctors with an interest in Mountain medicine. See www.medex.org.uk for details.

General advice for any active mountaineer or climber having a surgical stoma is to show your surgeon your preferred climbing harness, rucsac etc so, if medically possible, the site of the stoma can be tailored to fit your needs. It may save you the cost of a new harness!

Good luck and keep active

David Hillebrandt
Medical advisor to BMC