Working with a stoma?

[Gra]

So, 4 weeks after surgery (Right hemicolectomy and ileostomy), second week at home, I am still really struggling with my stoma. True, my surgeon plans to reconnect my plumbing in 3 months time. But what do I do until then?

This is a lot harder than I thought it was going to be. First, I am still experiencing a lot of pain (surgeon tells me this is normal!), and I am totally drained of energy most of the time. Learning to manage the stoma and changing bags etc is not hard, but just having it is a major pain in the ass. Went to see some friends at a local roller skating rink yesterday morning (no, I didn't even dream of doing any skating), only there perhaps 90 mins and had to leave because my bag was full (despite the fact that I emptied it before leaving home)! No facilities there to empty it. When things like this occur, it makes me feel it is totally unrealistic of to even think about returning to work while I still have the bag. Are you working with a stoma? How do you manage it during working hours?

 

[Samboi]

Hi Gra
It takes your body a long time to adjust to a stoma.
And I mean months - not days or weeks.
When I started back at work - I think I did 9 hours per week - and that was a struggle.
I could hardly walk from my car to the office - about 100 Metres.
I would get home from work and have to go straight to bed because of the fatigue.
One class I taught was on the other side of town - I would have to stop on my way there and rest for a couple of hours at my parents.
I was in a lot of physical pain, and psychologically I was struggling with the stoma.
So it does take time.
Just be patient and let your body heal.
I have followed your story - and you have been unwell for some time.
Your poor body needs to recover from this.
Be realistic about your capacity to resume work and don't rush it.
I know I went back to work way too early and it was a mistake.
Listen to your body.

Having said all that - once my body adjusted to the stoma, taking Humira, all the complications passed (gallbladder removal, kidney stones etc) - once all that was done - work was fine. Although I changed down to three days per week this year - and that was the best decision I have ever made.

Good luck Gra.
I hope you start feeling better soon.

 

[DJW]

Hi. Samboi is right. It takes a long time to adjust to a stoma. Bowel also takes time to settle down. If your getting reconnected in 3 months don't expect everything to settle before that. Listen to your body and try not to get discouraged.

 

[2thFairy]

In the first 2 months, I was emptying every 2 hours. The only way I could make it longer in between was to just not eat or drink anything, which IS NOT a reccommended thing to do so soon after surgery. You may just have to schedule a trip to the loo every 2 hours or so in your plan to return to work.

Things do slow down and your energy will pick up, but it takes a big chunk of time. Small improvements every day.

 

[Gra]

Hi Gra
... - once my body adjusted to the stoma, taking Humira, all the complications passed (gallbladder removal, kidney stones etc) - once all that was done - work was fine. Although I changed down to three days per week this year - and that was the best decision I have ever made.
Good luck Gra.
I hope you start feeling better soon.

Thanks Samboi, thank you for your reply, it helps a lot. PS how soon after surgery did you go back onto Humira? I want to get back on it but my surgeon says it iterferes with healing.

 

[Samboi]

Hi Gra
I started Humira post surgery.
I had the surgery in Jan and from vague and unreliable memory - started Humira in March or April.
For me personally - it was a terrible mistake to leave it so long as the disease ran rampant and took a long time to rein in.
I just had my reversal surgery - and was not asked to stop Humira. If I had been asked to stop - I would have refused. I'd prefer to have a longer healing time than out of control disease.

To get through where you're at now - the best advice from the smart and supportive people from the forum - they suggested I set a small goal for each day and work towards that.
You'll probably be fully recovered by the time you're ready for your reversal!!
But the reversal is a breeze in comparison.

Oh - and don't go back to work until you feel ready.
It is too stressful on many levels.
Wait until your comfortable with your stoma, you feel comfortable with your equipment, you're confident about how to manage disasters and when you're eating and drinking properly and your output is regular and manageable.
And you feel you have the strength - mentally and physically - to do it.

Hang in there.
It does actually get heaps better.

 

[Crohn'sFor Life]

Changing my bag used to leave me totally drained. I have gotten better at it, and don't find it to be as tiring.

As for facilities to empty your bag...in a pinch I have used zip-loc bags and soda cups.

There is no nudity involved...so I can "go" anywhere if I really have to.

 

[annawato]

Hi Gra, if there is a bathroom where you work and you can visit it regularly then there is no reason not to return to work as soon as you feel physically able. The surgery does take a lot out of you and as the others have mentioned there are the mental and emotional sides of it too. You have to be kind to yourself.

 

[Gra]

I know I'm a bit paranoid about this, but having had a leak a couple of times, I am worried it might happen again. When I put my bag on, I often find that the flanges (edges) of the sticky plastic backing are not evenly stuck down to my skin all the way around. I tend to get edge bits curling up and pulling away from the skin, especially near my belly button and one other part where my tummy is not very flat. I am desperately worried that I am going to get stoma output leaking at these points while I am asleep at night.

Is it normal for these little wrinkles to occur, and am I likely to get a leak from them. I use Welland LPD713 bags (for their low irritant claim)

 

[Samboi]

I had a similar problem which was very easily resolved by using the wings.
With the wings - I never had any problems with the base plate lifting.

Are you using stoma adhesive as well?
I always got a way better stick using stoma adhesive.

 

[2thFairy]

I keep Tegaderm with me to use if/when the outer edge curls up.

 

[Ginger is her name]

I went back to work 12 weeks post surgery. I started pt and then went back to ft. My biggest worry was if she had a "tantrum" while I was working and needed changing! It's happened several times and it has been no big deal. On one occasion, I forgot to reload supplies so they let me go home to change and them finished day working from home. My company has been supportive and flexible,along sure my needs have been met.

 

[annawato]

Gra, brava elastic tape around the edges will help it all stick down. I use it all the time. Alternatively you can use micropore tape (the white tape they use in hospital). When you put your bag on make sure you push the edge all around to ensure you have a good seal and hold your hand over it and press for a couple of minutes so that the flange warms and molds to your body.

 

[Misty-Eyed]

Wow going out 4 weeks post surgery? That's impressive. I started working from home for a couple of hours a day 5 week post surgery. Then I built it up till I went into work for a couple of hours. It was only after a few months that I was back at work full time. So glad I did it in this way. I cope with work fine and have leaks in public so rarely that I have to make sure that my spare bag is still in working order just in case!

It takes a while for your output to settle down. Your body is still dealing with this massive new change and the face that it has no colon to absorb water now. It also takes a while to get the right ostomy appliance for you..

Hang in there.. it sounds like you're doing great! Don't be hard on yourself!

 

[nogutsnoglory]

I had a similar problem which was very easily resolved by using the wings.
With the wings - I never had any problems with the base plate lifting.

Are you using stoma adhesive as well?
I always got a way better stick using stoma adhesive.

I googled wings and Ostomy couldn't find anything. I have used tegaderm but the output gets under and I can only keep it so long otherwise the skin will get damaged.

 

[2thFairy]

This is one that you might try. You can request free samples on this page too.

http://www.us.coloplast.com/products/ostomy/accessories/elasticbarrierstrip/

 

[Samboi]

It's a Welland product.
Hydra something.
They are crescent shaped and fit around the base plate.
Adds and extra layer of security and stick.
Mine always lifted if I did not wear my wings.
I never felt secure without them.
With them - never had a problem.

 

[Gra]

I had a similar problem which was very easily resolved by using the wings.
With the wings - I never had any problems with the base plate lifting.

Are you using stoma adhesive as well?
I always got a way better stick using stoma adhesive.

Samboi, can you please explain, what are "wings", how do they work and where do you get them?

 

[nogutsnoglory]

Hmm not finding it. The site doesn't list products under accessories. Weird.

 

[Gra]

Gra, brava elastic tape around the edges will help it all stick down. I use it all the time. Alternatively you can use micropore tape (the white tape they use in hospital). When you put your bag on make sure you push the edge all around to ensure you have a good seal and hold your hand over it and press for a couple of minutes so that the flange warms and molds to your body.

Thanks Annawato. Where do you get your "brava" elastic tape, is it supplied by your ostomy foundation, or is it a Chemist item?

 

[Samboi]

It is a Welland product - hydroframe.
They are crescent shaped and fit around the baseplate.
They always kept mine beautifully in place.
I never had a problem with lifting and leaks.
Gave me a lot of peace of mind.

 

[nogutsnoglory]

Thanks Sam found it http://www.wellandmedical.com/accessories/accessories-products/flange-extenders/

Those are like the Eakin rings that go around the stoma? Or do these go around the edge of the wafer to further seal. I'd only order if its the latter.

 

[Samboi]

Eakin ring goes directly around the stoma.
Hydroframe goes around the outside of the baseplate (which I think you're calling a wafer).
It holds it down.
Does a totally different job to the Eakin barrier ring.

 

[nogutsnoglory]

Perfect that is what I need. I called it flange till now but kept hearing wafer so switched to that. Now you bring base plate. I'm gonna just start calling it sticky pad lol.

 

[Samboi]

Sticky pad is brilliant!

 

[annawato]

Gra I just get them from my ostomy association when I do my normal order. Theyre called
Coloplast 12070 Elastic Tape and work just like the hydroframes Samboi mentioned. I prefer them to the hydroframes as they don't get all sticky in the shower like the flange (sticky part haha) and hydroframes do.
Wings are good for extra security but if you think you have a leak under there then change as soon as you can to prevent the skin getting too burnt by the output.

 

[Gra]

I had a similar problem which was very easily resolved by using the wings.
With the wings - I never had any problems with the base plate lifting.

Are you using stoma adhesive as well?
I always got a way better stick using stoma adhesive.

Samboi and others, thank you for the good advice regarding my concerns. Yes, I do use the stoma adhesive powder (Convatec). And I managed to get some sample "wings" (Welland Hydro-Frames) from my Stoma Nurse which I have been using for 5 - 6 days now, and am finding out the benefits and limitations of them.

Yes, they definitely do stop leaks, and give me more confidence as a result. But as Annawato said in another post, they can retain faeces under there (in contact with the skin) when there is a leak. I found this out the hard way a couple of days ago, when I used the Wings to extend the life of the bag to two days. I should’ve been tipped off by the fact that the bag got much more smelly, and when I did take it off the faeces had leaked under the wafer and there was a large potion of skin that was badly irritated as a result. So I am back to using the bags for one day only, but with more confidence - Thank You!

 

[Crohnzie Girl]

Hi Gra,
I'm wondering bout work myself. I quit my job just days before my er surgery. I just couldn't with the pain any more. Now I wish I hadn't done that. Since the surgery I feel so much better. But I start to thinkam I ready to find another job? So many things crosses my mind. Bc I put my body thru so much I was hoping I could apply for disability jus for 1yr to fully give my body a rest and learn how to live with a colostomy bag. It's not easy for me. I have to be reliable at a job and I wonder all these what ifs. heard it takes 6mths to even get a response from disability. And when I do...they deny me and have to appeal which takes another 6mths. Ummm...what am I supposed to do for money in the mean time? So its a question I ask myself, either deal with it and find a new job by my recovery time, or take the chance and apply for disability anyways??