Ileostomy

[guest78]

Hi All,
I just found out today that I am going to have an Ileostomy, as well as back on steroids until it is fitted.
It is all a bit of a shock, does anyone have any advice or anything :/
x

 

[Jim (POPS)]

GEC, Hello. I had a ilyostomy for about 9 months and my wife has one for the rest of her life. The one thing I would like to say it that it's not as bad as you would think. My wife does everything, there is nothing she can't do and she is so healthy ever since she got it. Mine was a temp one because I went septic after a resetion and they had to do it.

You will get use to it but it will take a bit to do so. Not that long just about a month or so. The good thing is you don't ever have to run to the bathroom again. you can eat anything you want (at least my wife and I could) as my wife says. "It's the best thing she ever did"

Don't stress out about it, it is what it is and you will do just fine. There is always someone out there that way worse off then me or you.

Keppyou head up you will be just fine, Really, you will

Jim (Pops)

 

[guest78]

Hi Jim.
Thank you so much for replying. It's really nice to hear good stories out of an ileostomy! I'm very nervous but just looking forward to having no pain!
And I will be healthy for the first time in so long! Thanks for your kind, supportive words. I hope I will be okay!!
XXXX

 

[annawato]

Hi Gec and welcome to the club. Most people are on balance relieved to have a stoma and get over all the problems and pain they faced before. In the beginning they can be a real nuisance but you soon get used to all their idiosyncrasies and life gets much easier. Have a browse of the sub forum and any questions, ask away.
When is your surgery scheduled for? Is the ileostomy permanent or just to help the bowel recover after surgery?

 

[guest78]

I have been having a perianal flare since September with a lot of bleeding since June. And nothing has touched it, not steroids, Humira, aza etc.
They are hoping it will be temporary to rest the bowel. But it may end up being permanent.
Luckily I am not having any of my bowel removed due to where the flare is.
I'm sure I will have a lot of questions as time goes on!!
Thanks so much! Xxx

 

[Samboi]

Hi GEC.
My bum is having a lovely rest from severe perianal disease thanks to my Stoma.
It has taken the ileostomy, Humira and salofalk butt foam and 18 months to get it under control - but it's worked! So be patient.
Getting used to the Stoma was psychologically very very tough.
Now - meh - I forget its even there!
Good luck with your surgery and recovery!

 

[acarvic1]

was at hospital yesterday and the surgeon has given me a date for an irreversible ileostomy JUNE 6th I am really unsure how I will cope mentally and physically I am 56 yrs old and have suffered with Crohn's since my early 20s I have had a resection years ago but cannot remember much at present on adalibumab weekly and prednisolone 20mg daily which I have been on constant for the past 20 odd years

 

[guest78]

Good luck! I haven't got a date yet. But it's looking like its July/August. I switch between being so worried and being ok with it :/
But I have only had 24hours to digest the news.
It's going to be tough. I feel like I haven't had Crohns long enough to need this! I was diagnosed nearly 6years ago aged 16. Xxx

 

[Nyx]

I was diagnosed in 2006 and got my stoma (a permanent one) in 2009...there doesn't seem to be a time frame for these things! I don't have any other advice beyond what was given here, so I'll just wish you both good luck, and if you have any questions, feel free

 

[annawato]

Good luck to both of you and let us know how you get on or if we can help with any questions etc.
:heart: anna

 

[guest78]

hi guys
am just wondering what the bowel prep consist of? How long before the surgery do you have to be in hospital? How long are you in hospital for afterwards?
I am also really nervous about the catheter!
I have terrible anxiety about the unexpected and am really worried.
xx

 

[Nyx]

Time hospital varies for everyone. I was in for over 5 weeks, but my surgery was an emergency, and I had a lot of complications afterwards (not related to my stoma....I had blood clots and a blood infection). I think the average seems to be about 4 to 7 days if everything goes well.

 

[guest78]

Thank you!!

 

[elrafantas]

Hello GEC,
I had the best worry-free months of my life with my temporary stoma and I wish I still had it! It is great being able to choose when you want to go to the loo instead of being controlled by disease. I hope you get on OK, all the best to you.

 

[Jaano711]

Good luck you newbies to be. It is terrible to have to think about it for so long. All the what and ifs. Just want you to know that I was where you are less than a year ago, I have to say life is easier now I don't have to live my life on the loo. The best thing it has given me is my freedom and liberation from the bathroom.

There is always someone around here to talk to if you need to and the people on this forum are so helpful and inspirational.

Cheers Janette

 

[annawato]

i was in hospital for months pre surgery due to intestinal abscesses adn cos they had to build me up nutritionally with TPN and for 3 weeks after, but that was cos I developed a wound infection. I had no bowel prep.
If all goes well you should be out within a week but the time varies depending on whether the bowel starts working quickly so that you can eat and drink normally and how you are coping. One guy on the forum was out in two or three days but that is very unusual. If the op is done by keyhole and since you don't need a resection or removal of adhesions you should be out fairly quickly. But don't rush it, you need to get used to dealing with the ileostomy. Both my ileostomys have been very high out put and with the first I was in hospital for a few months after because they were worried about dehydration etc. This time they figured that I coped last time so they didn't worry about that.

 

[annawato]

P.s. I always feel very silly pressing the "post quick reply" button after I have written such long answers!

 

[Jaano711]

I was in for 12 days. Things went really well initially, but just at the end of my stay my output became very watery and I became dehydrated. I wasn't allowed to leave until output slowed down and I was staying hydrated without the drip.

I then had to stay in town for another 10 days before the surgeon would let me travel home. That was a real drag.

 

[2thFairy]

I was in for 12 days also. First 3 days were good, then ileus, vomiting, and rapid output all at once after ileus corrected itself, followed by dehydration. I had read enough stories here to be prepared for all of the different possible complications, that when each one came up, I was able to keep my cool and not panic. This forum is great!

 

[guest78]

Yeh this forum is brilliant. A lot of people seem to suffer from the dehydration issue. I'm going to keep a 1-2week stay in hospital in mind.