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Ileostomy Newbie

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Posted 3/24/2014 8:17 AM (GMT -5)
Hi all,

I'm Luke, 28 ,from the midlands UK. I have been a long time browser of this site over the past year or so after having UC for around 4 years, last year things escalated somewhat severely and I was diagnosed with Pancolitis, and after trying pretty much every med available, none of them worked and I finally bit the bullet last month and opted for surgery (Total Colectomy with ileo-anal pouch construction) leaving me with a temporary loop ileostomy until the second surgery or 'takedown' as I've heard it called.

Anyways what I'm really after is a few tips and advice, I was In hospital for 3 weeks and was discharged last week, it know it's early days but I'm really struggling with coming to terms with the ostomy, specifically confidence to go out without leaks etc, something which I have suffered with since day one for some reason after trying several different types of appliances ( I have to use a convex one). Sleeping positions are tricky too without worrying about it.

I know it's a very broad question but any general advice would be gratefully received. I've obviously had similar conversations with my stoma nurses but I want advice from people that have gone through what I have.

Many thanks all

Luke

:-)
Posted 3/24/2014 9:24 AM (GMT -5)
Hi Luke! I definitely understand your concerns, it's a tricky situation. You've got to find the right products that work for you, and give you confidence.

I use an adhesive remover when I take off my wafer. I have sensitive skin and any pulling really irritates it. Half the battle is keeping your peristomal skin healthy, but there are a lot of products to help with that, I'm sure your stoma nurse can offer suggestions if you have skin issues. Also, I find it important to thoroughly clean the area with warm water, and then let it dry completely before I put my wafer on.

I too use a convex product, the Coloplast SenSura 2 piece with light convexity. I add to that an Eakin seal (which I prefer to apply directly to my wafer, not my skin - but either works it just depends on what you find easiest). Then I snap on my bag and lie down on my couch for about 20 minutes with my warm hands over the wafer - this helps the adhesives bond really well to my skin.

I also like wearing a belt for a few hours after each wafer change - I'm out and about and the belt helps me feel as though the adhesive is bonding to my skin. Whether or not it is doing this is not relevant, what is relevant is that my mind likes this part of the routine, and I feel very secure with my setup.

I get 5 to 6 days with this routine, and let me tell you I shower daily, workout 5 days a week and sweat like crazy!

Good luck :)
Posted 3/24/2014 11:38 AM (GMT -5)
Hey, thanks for your advice!

Most of the things you suggested I have already been doing ( adhesive remover, cleaning with wet cloth and making sure it's all dry, and I've just started using an adhesive paste) , I need quite a deep convex and although from the start I really wanted to use the coloplast , the convexity just isn't deep enough :( . The one I have been using is a convatec 2 piece and so far it's not too bad, I forgot to mention, I still have a healing vertical wound from my belly button to below the belt line and that still needs a dressing, which is real problematic clashing with the wafer, hopefully things will get a little easier when this has healed. Not sure how long I'm going to be having the ileo but I know I need to get used to it!
Posted 3/24/2014 12:30 PM (GMT -5)
Welcome Gonk85!

You can trim the wafer from the vertical incision area. I actually still trim it off my wafer because I get a better seal instead of trying to get anything to stick over the scar.

I would recommend an ostomy belt while you have your healing incision. It does give a little added support (you can place a pad of gauze under the part that goes across the incision).

There are varried levels of convexity so you may not have had the right one with the Coloplast. I use their Extra Convexity and it's the deepest/strongest I've found (that's still somewhat comfortable, too).

Remember to measure with each change since your stoma is still shrinking…that could be an issue until it settles down. Sometimes it's just trial and error to find the right appliance for you…don't give up! Have you contacted the major manufacturers for samples? They will ask what you are using now and send something similar from their line.

Keep the questions coming…they'll get more specific as your figure things out!!
Posted 4/13/2014 7:20 AM (GMT -5)
Sampels from supplies are grea. Im terrified of my iliostomy but comming to terms with what has saves my life..the information i have read here is great.. Thank
Posted 4/13/2014 10:36 AM (GMT -5)
I had a lot of trouble with my temp ileo too. I was scared to death of it! It's kind of funny now when I think back to it but at the time I would just sit in the bathroom and cry whenever I had to change the bag or wafer. I had the ileo for about 4 months and right around the two month mark I really started to feel more confident with it and I wasn't as afraid of going out. The first two months I literally stayed home indoors which really was a bummer because it was summer time.

So I have no real advice from my end....just that you will get more used to having it and it becomes less alien and more a part of you. And then by the time you are used to it.....it's takedown time!
Posted 4/13/2014 11:07 AM (GMT -5)
Hey Luke,
The first few weeks can be quite daunting but it does get better. and as the weeks go on your confidence will build up also, once you find the right pouch for you that will help too.

You could try using the semi circle arches which you place around the pouch it gives it more security I use the Brava strips which are great and stick really well to the skin.

Hope you have enjoyed the sunny weather today in the Midlands it's been fab down here in Buckinghamshire x Bev
Posted 4/13/2014 3:52 PM (GMT -5)
A few months will go by like a flash in a pan - it did me.

Only I'm stuck with my ostomy for life. At least yours is only temporary: this probably seems like cold comfort, but believe me I'd go to the ends of the earth and back to get this reversed.
Posted 4/23/2014 9:22 PM (GMT -5)
I had a colonectomy 4/10 and am still in the sore, what the heck happened to me, crying, cant get a bag on right stage. I am having a reversal in 6-8 weeks so i do understand how thankful and lucky I am. I still cant wrap my head around this.My output is still liquid- i go back to the surgeon the 28th and i hope he can guide me thru that. I try to get a good walk in everyday- it just seems I am tired so much of the day. How was your recovery time? Tired? Food choices are hard to decide on also. I appreciate all of your input!!! I also am having a horrid time with the prenisone. Taper will be complete by mid-May- but it makes me sad, cry baby, depressed.

Post Edited (CherriClaus) : 4/23/2014 8:25:13 PM (GMT-6)

Posted 4/24/2014 6:38 AM (GMT -5)
I had mine on 4/14 & still get tired, still use pain meds, still nap daily.... my appetite is small- I'm hungry a lot, but can only eat a mini-meal. Which I do, like 6 times a day! I'm still sort of eating low-residue stuff, mainly due to habit. I was not on pred at the time of my surgery, thankfully- I can't imagine dealing with a taper on top of the rest! I have a perm ileo, so it's an end iloe as opposed to a loop- so far my end ileo has been incredibly easy. No leaks, semi-solid output, not one issue at all. I keep waiting for *something* to happen & it just doesn't. I've heard the loop ileos are much more of a hassle to deal with. Be patient, it's still early- easier said than done, I know! I've been anxious myself for things to move ahead.
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