Ileostomy Reversal

The Rook

Hello all,

In 2 weeks time I'm going to be having my Ileostomy reversed.

It's been 3 months since the initial op that created it and I'd be interested to hear from anyone with experience in their reversal.

My surgeon has said that instead of stitching me up after the reversal they'll leave the hole in my belly open so it can "heal from the inside" ... now naturally I'm going "Ehhh, what the hell?!!!" so I'd be interested to hear any war stories etc of what to expect, recovery time, diet, management of the wound afterwards, residual scarring etc etc!

Thanks

The Rook

bluebell1

hello, I can't help re the reversal as i am having one myself in Feb next year. But what i can tell you is that i had my ilestomy is June this year by keyhole surgery and the would of my belly button refused to heal..... i think this may be similiar to the whole left after the surgery. Mine oozed for a number of months after and it has now closed completely by itself. It is completely painless. it is a bit of a pain if it does ooze and needs a dressing everyday but to be honest i found the whole stoma experience much much worse. hope this help.
ps. which hospital are you attending?

The Rook

Thanks for that, I had a similar experience post stoma creation but mine wasn't done keyhole and I have a lovely 20cm scar going down from half way on my chest, through my navel and very (very) close to my nether-regions!

I had a few stiches open up that oozed but I just can't picture it on a larger scale and wondered if anyone had gone through it. I found the whole stoma experience to be grand, it's an inconvenience but it's going away (and I always knew it was) so I was never too stressed about having to deal with it.

For the reversal I'm going to the Beacon.

bluebell1

best of luck with the surgery. i'm attending vincents. that scar sounds nasty but the best way to look at it is as a war wound / scar!

chazzywhazz

Just wondering how it went... I might be opting for that route too

The Rook

chazzywhazz wrote: »

Just wondering how it went... I might be opting for that route too

Well it's over a year now since I've had the reversal and I have to say I couldn't be happier with how it went.

Initially I was (as you can tell from my original post) a bit apprehensive about how it would go, but it went really well. In the immediate days after the reversal I was very very tender and had an open wound in my stomach (on the outside if you know what I mean) I was kept in for observation for about 3 or 4 days and was free to go home after that. about 3 days after the operation things started to move normally through my bowels. One thing I can't recommend enough is baby wipes, and lots of them ... things burn initially and you don't want to aggravate the area by using ordinary toilet paper.

With regards the wound itself it gets packed with a silver laced gauze that promotes healing quicker, and initially while it's like an upside down cone shaped wound going into your stomach the bottom heals over and the shape is like someone took an ice-cream scoop to your stomach, again bit by bit it heals over until eventually you're left with a red oval shape scar tissue and you don't have to pack it any more and it heals over. All in all I'd say it took from mid December to mid to late January for the complete healing process to be finished and you don't want to lift anything during that stage a it could give you a hernia quite easily apparently.

The hospital do the wound care for as long as you're in, then you go home and they arrange for visits to a wound clinic, and then eventually you can just do it yourself until you no longer need to do it at all. It's a bit surreal looking down and seeing inside yourself (but then again no more surreal than looking down and seeing a part of your bowel on the outside!!)

All I've got left right now is a 20 cm scar from the initial operation and a pinky oval scar from the reversal and I quite like them actually, they remind me of how healthy I now am in comparison to before. I'm in great health now, and everything has fully returned back to normal, I'm training for a marathon in 6 weeks time and I look back to this time last year when I never thought I'd be where I am now and realise that it was worth every little niggle to get back to normal again.

kmcd123

The Rook wrote: »

Hello all,

In 2 weeks time I'm going to be having my Ileostomy reversed.

It's been 3 months since the initial op that created it and I'd be interested to hear from anyone with experience in their reversal.

My surgeon has said that instead of stitching me up after the reversal they'll leave the hole in my belly open so it can "heal from the inside" ... now naturally I'm going "Ehhh, what the hell?!!!" so I'd be interested to hear any war stories etc of what to expect, recovery time, diet, management of the wound afterwards, residual scarring etc etc!

Thanks

The Rook

Hi rook im a new member of the ileostomy family and at the moment im finding it very hard mentally to deal with it.i dont suppose you know of any community or forum that offer advice and support, mine is tempory also, how did your reversal go, I hope your keeping well now, regards kmcd123

kmcd123

The Rook wrote: »

Hello all,

In 2 weeks time I'm going to be having my Ileostomy reversed.

It's been 3 months since the initial op that created it and I'd be interested to hear from anyone with experience in their reversal.

My surgeon has said that instead of stitching me up after the reversal they'll leave the hole in my belly open so it can "heal from the inside" ... now naturally I'm going "Ehhh, what the hell?!!!" so I'd be interested to hear any war stories etc of what to expect, recovery time, diet, management of the wound afterwards, residual scarring etc etc!

Thanks

The Rook

Hi rook im a new member of the ileostomy family and at the moment im finding it very hard mentally to deal with it.i dont suppose you know of any community or forum that offer advice and support, mine is tempory also, how did your reversal go, I hope your keeping well now, regards kmcd123

The Rook

Hi kmcd,

Firstly I'll say congrats to you because whatever the problem was that needed to be fixed by the ileostomy is more than likely fixed. Also it's a temporary ileostomy so it will be reversed and that's the greatest feeling. I remember waking up from my initial operation and asking if it was permanent or temporary (could have gone either way) and once they told me it was temporary I just sighed a big sigh of relief and went back into a drug induced stupor!!

I know how you feel right now in that you think it'll impact hugely on your life and I won't lie to you, there are times when it's really inconvenient, but it gets easier and easier the longer you have the bag. Things just click, and while it's not the nicest thing to have to manage the bag, it really becomes second nature to do what needs to be done.

As I said above, my reversal was only 3 months after my initial operation so I was very lucky. How long ago was your operation and when do you think your reversal will be?

As for how I'm doing right now , I couldn't be better. In fact a year after my reversal I ran the Connemara maraton and I'm now training for a triathlon or two later this year. My ileostomy was because of Crohn's disease and I am completely Crohn's free right now and my quality of life has improved so much all because of my ileostomy. It isn't nice but it really is worth it.

As for any support groups I'm not aware of any offhand, but depending on your illness there is the Crohn's and Colitis Support Group that are very good.

Having said that I'd be more than happy to be your own personal support group (and the same goes to anyone else out there who is reading this). I know what it's like, I've been there, I've bought the tshirt (actually now that I say that it reminds me, you should get an ileostomy support belt, it really helps hide any noticeable bumps from the bag and also helps keep the bag close to your stomach wall and stops the bag from pulling on your stomach muscles , it's a serious god-send.)

So message me back, ask any questions, I'll answer anything I'll help as much as possible!

Best wishes

The Rook.

mano bano

Hi I had my ileostomy reversed in April and was also left with stoma wound to heel from inside out which sound bad and is not nice to look at I had to get dressing packed every 2nd day it took about a month to heel I still have a big scare about the size of a €2 coin. baby wipes are a must after reversal and Vaseline or something like it because down there is not used to the output since it been out of action. best of luck

camroc76

kmcd123 wrote: »

Hi rook im a new member of the ileostomy family and at the moment im finding it very hard mentally to deal with it.i dont suppose you know of any community or forum that offer advice and support, mine is tempory also, how did your reversal go, I hope your keeping well now, regards kmcd123

Hi Kmcd, My ileostomy is permanent so I have had to deal with it as it aint going anywhere, if you need to talk or vent just drop me a PM. Who is your stoma nurse ?, I would lean on them alot, that is what they are there for, and they should be super helpful.

I think the http://www.iscc.ie, Crohns Society have a means of helping also, give them a call.

The first six weeks are tough, so dont try to be a hero about it. I am 6 months post surgery and only getting back to normal life now.

Cam.

Papa_Bear

I've got mine 10yrs this July!

There's not a day goes by that I'm not frustrated by it. I had UC and had to have a total colectomy (removal of the entire large intestine) and only last year had to have a proctectomy (removal of the rectum) because of anal stenosis (closing up behind, causing a blockage) and Im still getting over it (still got some leakeage) after 8 months.

Ten yrs and still can't really accept it psycologically.

Sorry about the gloom but that's my experience.

camroc76

Not too sure how to response to that last post since I am only 6 months post. !!!
I decided to go the pancolectomy route first time round on advice from my surgeon. I too suffered from UC however it was colon cancer in the end that decided the removal.

Mentally of course everyone will feel and react differently to the procedure, that is the nature of being human. I for one have decided to grab it with both hands and not let it drive the way I live. I don't let it drive my self image askew...enough marketing drives out there to do for ya.

you gotta live your life is my view

oOBowzerOo

Hi,

I recently had a ileostomy in January, Im 24 I was diagnosed with FAP(Familial Adenomatous Polyposis)(also my father and three sisters) and as a young child and was going for regular Colonoscopy but I had my first operation when I was 12/13 I had a subtotal colectomy and and decided to have the operation as I lost a sister to Colon Cancer in late 2013, the fare with me was always would I be stuck with the bag for life and my three sisters had the same operation two were left with the bag and the other was reversed, thankfully after my pouchagram everything was fine and I am able to have my stoma bag reserved and I am due to head back into Hospital at the end of April.

At the start when I came home from hospital I found it very hard to deal with the bag but overtime I got used to it and I am able to get back to normal life in some way, I am due to return to work in two weeks time and I will be back off for a month or so after the second operation.

I just was wondering anyone who has a temporary ileostomy do you suffer from a discharge from bum, I know its normal its a mucus and that but I seemed to be experiencing it on a daily basis and it has been causing discomfort?

And also I am willing to exchange experience and advise with whatever I can to help anyone and I have looked around the net with no luck

Regards
Niall

thegreengoblin

oOBowzerOo wrote: »

Hi,

I recently had a ileostomy in January, Im 24 I was diagnosed with FAP(Familial Adenomatous Polyposis)(also my father and three sisters) and as a young child and was going for regular Colonoscopy but I had my first operation when I was 12/13 I had a subtotal colectomy and and decided to have the operation as I lost a sister to Colon Cancer in late 2013, the fare with me was always would I be stuck with the bag for life and my three sisters had the same operation two were left with the bag and the other was reversed, thankfully after my pouchagram everything was fine and I am able to have my stoma bag reserved and I am due to head back into Hospital at the end of April.

At the start when I came home from hospital I found it very hard to deal with the bag but overtime I got used to it and I am able to get back to normal life in some way, I am due to return to work in two weeks time and I will be back off for a month or so after the second operation.

I just was wondering anyone who has a temporary ileostomy do you suffer from a discharge from bum, I know its normal its a mucus and that but I seemed to be experiencing it on a daily basis and it has been causing discomfort?

And also I am willing to exchange experience and advise with whatever I can to help anyone and I have looked around the net with no luck

Regards
Niall

Hi there,

I had a temporary ileostomy around 15 years ago and I do remember the discharges. From what I remember I got them on a daily basis for the first few weeks after the op but think they eased up. Didn't cause me much discomfort I have to say. Have you asked your doctor or stoma nurse about it?

oOBowzerOo

thegreengoblin wrote: »

Hi there,

I had a temporary ileostomy around 15 years ago and I do remember the discharges. From what I remember I got them on a daily basis for the first few weeks after the op but think they eased up. Didn't cause me much discomfort I have to say. Have you asked your doctor or stoma nurse about it?

Cheers for the reply thegreengoblin, sorry for the late reply!!!
Yeah the discharge has eased off abit, or more like I can control it abit better than I could!! I just found that I could go outside the house with out me controlling it! I had ask the stoma nurse about it on her last visit she just said it was normal and that because the rectum is still there, in a way glad the discharge is coming out because I know it is working, heading in the end of the month for reversal looking forward to it just get back to normal and been able to lace the boots back up for the coming GAA season!!

Thanks Again
Regards
Niall