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06-06-2017, 11:25 AM   #751
Jambo1874
 
Join Date: Mar 2017
Location: Stevenage, United Kingdom

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Well I had a loop colostomy done a week ago. Opening of abscesses as well but nothing removed. Got off lightly there. I have a diseased section of bowel still in place but surgeons reckoned that it was too high risk to do anything now. All seems good as my system is working regularly and no obstructions.
I probably visit the toilet twice a day to empty the bag - beats the 26 times in 24 hours before the op.
My next question is how to get clothes to fit. The stoma is just below my belly button but with the bag seal that puts my waistband of trousers very low - can't work out what to do yet. Early days as it is still tender.
Any advice appreciated
06-06-2017, 11:28 AM   #752
Jambo1874
 
Join Date: Mar 2017
Location: Stevenage, United Kingdom

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Should have said below belly button and to the left
06-06-2017, 11:47 AM   #753
fuzzy butterfly
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Hi jambo.. glad all went well. I found myself wearing pj bottoms a lot around the house and tracksuit bottoms outdoors for a few weeks . Then i went back to wearing my normal clothes. I had to change my bag a bit more often but it was still a lot less than before i had the ileostomy. Good luck and best wishes. I hope you feel much better for the op. I know i did..i had mine reversed after 11mths and still doing well.take care jambo 💕
06-11-2017, 01:29 PM   #754
Dapper_Dan
 
Join Date: Apr 2017
Location: London, United Kingdom

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Hi all,

I haven't read back through the 11 or so pages of support, but I assume my feeling of late is a common one...

I've had my stoma for a little over a year now, although I had expected a reversal in November past. I was unable to proceed with the op though because I relapsed. Unfortunately my case is complex and my gastro team have been unable to stabalise me for long enough to get reconnected.

As time wears on I am becoming more discontent with my situation generally. The stoma has always bothered me at work. I am quite private and very shy about it, however it can be very difficult to hide - especially in summer. I find myself conscious of the bulge in my t-shirt (even though I wear a tight waistband) and I'm always terrified of making farty noises at my desk in an open-plan context or particularly at meetings. I continuously worry about a smell and the scenario that haunts my dreams is for a leak or straight-up burst when out and about.

Admittedly being ill is bringing my mood down as well and amplifying these problems, however I have been searching for a perspective that will help me to be more confident or see things more positively. Having been ill for nine months now and being unable to plan any holidays or do any exercise/ activities, life is getting me down. (In an ideal world I would be booking a trip to the US and swimming/ skateboarding fairly regularly).

Thanks for reading my moan.

Dan
06-11-2017, 01:55 PM   #755
fuzzy butterfly
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Hi Dan.. i did have a few leaks at work. I did manage to use the toilets to quickly do a change. Once i started using stoma paste around the hole in the flange, i had no more issues. As for a full blow out only happened once at home in bed. You just have to let air out as often as you can. I used to empty my pouch when it got about half full. It meant more loo trips but saved on leaks and changes. The farty noises are hard to avoid. I used to say oopps sorry hetty(my ex stomas name)has a lot to say for herself.☺
Unlike you i was loud and proud about my stoma, (though i do get how you feel and some people are more private)So if i did a dissapearing act at work they knew where id be .
Sending love n support to you .Moan all you need to by the way. We all have a moan now n then. I truely hope things improve for you soon. Take care 💕
06-11-2017, 11:55 PM   #756
Ginger is her name
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Location: Reading, Pennsylvania

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Hi Dan! I've had my stoma for 4 years now! I also like you, thought I would be able to be reversed, but I had complications with fissures and fistulas, basically having eaten my muscles in that area...

It's tough for sure! I'm very open about my stoma/ostomty, as I feel there isn't enough information about them! Any way, I can certainly appreciate being private about it. Here are some things I found helpful:

1. Just as Fuzzy Butterfly mentioned, I too use a stoma paste. I have very few leaks.
2. Always wear something (undershirt, etc) under your clothing. Wear a size smaller than usual, as it helps hold things in place.
3. In the beginning, I wore baggy clothing too. Now, I find wearing something that fits properly looks so much better, and those who don't know about my stoma, really don't realize it's there.
4. Keep in mind those who know you have it automatically will look at its location, and they can tell you have it, no matter what you wear. Those who have no idea, really won't realize it's there. Believe me, I still struggle with this, but I work on it everyday!

Most importantly...find the positives in what your stoma has allowed you to do...for me, my Crohn's was so bad, I stopped going any where...I even telecommuted, as I couldn't make the 15 minute drive to work without stopping to use the bathroom. Now, I don't worry about it!! I enjoy life!!

I almost forgot! I still carry an emergency kit with me containing extra supplies. Ohhh...and gas...it comes at the worst times!! (Like in a work meeting!) put your hand on top of your stoma, and gently press in towards your stomach. It stifles the sound so others won't hear it!

As far as exercising...I've heard there are companies that make supportive wear for people to provide more security/stability when exercising (Stealthbelt).

Good luck to you!


06-12-2017, 08:52 AM   #757
Jambo1874
 
Join Date: Mar 2017
Location: Stevenage, United Kingdom

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Do you guys have an ileostomy. I have a colostomy and can't see it leaking fluids but it can leak gas if I don't fix it properly.
I would normally try to hide my 'problem' but now ,like Fuzzy, intend to be as open as I need to be. I have now had the stoma and bag three weeks now so my experiences are limited but my imagination is not. I worry about returning to work but with the gas problem at least I have an activated carbon filter now, in the bag, and most people don't 😅
06-12-2017, 09:59 AM   #758
fuzzy butterfly
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Hi you can buy liquids to put n your bag to make it smell nicer☺..ask google to bring up ostomy accessories. Or if you can ask a ostomy supplier you know of for a free sample on their websites. Most companies do samples and send them to you free by post.
💕💕 ps samples are good get as many as you can lol..
06-12-2017, 12:08 PM   #759
Bufford
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Join Date: Dec 2015
Location: Northwestern Ontario

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I've had my stoma now for 17 years. It was supposed to be a temporary one, but ended up keeping it as its not possible to reverse due to active Crohn's. I took the positive approach and accept my situation. I certainly am loud, proud and yes I'll accept the fact that I stink, and I will sometimes warn those around me of a sudden but needed release and to expect it to go well beyond the fringe area. I like to use humor to help deal with the reality of living with a stoma, its a friend, and sometimes its a weapon. There have been times when people have been rude and I can return the favor with a controlled release of gas.
For clothing I stay in a housecoat at home, the less the clothing interferes with the appliance the longer it lasts. I use suspenders to hold up my oversized pants. Going oversized provides the room needed for the bag, and loosen off the belt or go beltless when one doesn't need to carry things on the belt.
Living with a stoma is a compromise, but using positive attitude and acceptance goes a long way.
06-12-2017, 06:14 PM   #760
Tubes
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I've had a stoma for over a decade and over the years I've had lots of skin issue including pyoderma gangrenosum that caused the bag to leak.once the pg cleared up I continued to use Duoderm cause once I've started using that I stopped having leaks and less skin issues.
06-13-2017, 09:56 AM   #761
Bufford
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Rashes around the stoma are an ongoing issue. I have one area that is very hard to maintain at the one o clock position. I see an ostomy nurse every couple of months to monitor it.
06-15-2017, 09:31 AM   #762
Dapper_Dan
 
Join Date: Apr 2017
Location: London, United Kingdom

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I've also had various skin problems, mostly ulceration.

I also had a prolapse before I upgrade to a loop... Now that has prolapsed as well, albeit not so badly. Apparently it's common with a loop due to self-weight issues.

I wear normal clothes as often as possible. I've had to go a size bigger on everything though due more to weight-increase from the 6 months + of steroids. For Jambo who was wondering how to wear clothes with his stoma positioning - mine is almost the same, but on the right side. I have this snug fitting waistband that covers the whole bag and keeps it flat against my body. I just empty it often to keep it as flat as possible.

The weather is really warm here in London at the minute and I'm sweating profusely. This can always start the bag adhesive failing. I use seals and a belt as well to help it all stay put. Occasionally I use an extra bit of that half-circle tape if it's coming free.

I suppose quite boldly I don't keep a change of bag/ clothes at work. There's not really anywhere to store it and I can't bear the thought of having it in a hold-all under my desk. To those who don't know about the stoma bag, I guess it would look like I think I might soil myself to them, so I need a spare like a primary school child.
06-15-2017, 04:52 PM   #763
Jambo1874
 
Join Date: Mar 2017
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Thanks Dan, I have just ordered an elasticated belt from Amazon that is sold with a pouch - it is supposed to be a mini bum bag (7.99). I am hoping that both together will provide that extra support. I now empty the bag regularly as well (learning more every day). The thought of leaks is less of a worry because my Crohns had made me almost incontinent so I had spare clothes in the car and 'always' had my car key in my pocket - I was barely coping with that - the bag actually reduces that risk for me. Your post is optimistic and shows that there are always coping strategies. I suppose one of the difficulties is that people use these forums when in difficulty of some sort and for me they sometimes read as horror stories (the word 'prolapse' fills me with dread). There must also be lots of people who have no trouble at all and are not using the forums.
I am in week four now and just stopped my antibiotics so I am looking forward to the first cold beer, in a long while, and BBQ in the 30C heat that is coming Londons way 😄 Feeling better.
06-17-2017, 07:42 AM   #764
Dapper_Dan
 
Join Date: Apr 2017
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A prolapse sounds (and looks) worse than it is, but it's a hell of an annoyance after it happens the first time as it will just keep on happening.

Just don't lift anything heavier than a couple of kilos and you'll be fine. (I lifted a flat-pack wardrobe)...
06-17-2017, 11:00 AM   #765
Jambo1874
 
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Sounds like something I would do - thanks for the advice - made my day - lol
06-17-2017, 10:44 PM   #766
Ozboz
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I have a transverse colostomy at the moment myself, it was meant to be a temporary one but the bowel has now abscessed and there is adhesion between the large bowel and small intestine. so now getting all the diseased bowel out and will have a permanent ileostomy now. I'm actually really happy with the temporary one now it has given me my life back.
so will be alright with a permanent one now.
06-21-2017, 08:40 AM   #767
Susan2
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Just to say that I've recently changed to the Coloplast Sensura Mio ileostomy bags (convex because my stoma retracts) and I am very happy with them. I used to need the Brava paste to fill in a 'valley' but the base of these bags is much more flexible and molds into the dip. I have had no sign of a leak (touching wood, of course).
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Crohn's Disease - symptoms since c1955, diagnosed early 1970s. On Prednisolone until...
Total Proctocolectomy in 2000.
Ileostomy that behaves most of the time
Currently on no medications, but under constant gaze of very caring GP, with annual blood and other tests.
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