Crohn's Disease Forum » Surgery » Stoma Subforum » Stoma Support Group


 
06-06-2017, 11:25 AM   #751
Jambo1874
 
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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
 
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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
 
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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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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
 
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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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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
 
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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
 
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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
 
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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...
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Ileostomy that behaves most of the time
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01-10-2018, 03:40 PM   #768
Madelein
 
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Hi all. I am sorry if I'm posting in the incorrect place...struggling a bit to find my way around.

Just had a second opinion and the second opinion officially changed my diagnosis from UC to Crohns. I was in hospital in December to drain an abscess, tighten my seton stitch and had 5 days of iv antibiotics. I'm barely out of hospital 4th week now, still on cortsone and the next abscess have formed.

Doctors are really pushing me to do a colostomy. I don't feel that I'm emotionally ready for it. Doctor can't/won't give me any guarantees that with a colostomy the fistulas and abscesses will heal and go away.

I am scared that if I go ahead with the op and nothing improves that I will not cope with it.

2 questions -
1. How do one prep yourself to get ready for this big change?
2. From your experiences, does a colostomy help to allow for healing of the fistulas and abscesses?
01-13-2018, 08:02 AM   #769
Dapper_Dan
 
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Hi all. I am sorry if I'm posting in the incorrect place...struggling a bit to find my way around.

Just had a second opinion and the second opinion officially changed my diagnosis from UC to Crohns. I was in hospital in December to drain an abscess, tighten my seton stitch and had 5 days of iv antibiotics. I'm barely out of hospital 4th week now, still on cortsone and the next abscess have formed.

Doctors are really pushing me to do a colostomy. I don't feel that I'm emotionally ready for it. Doctor can't/won't give me any guarantees that with a colostomy the fistulas and abscesses will heal and go away.

I am scared that if I go ahead with the op and nothing improves that I will not cope with it.

2 questions -
1. How do one prep yourself to get ready for this big change?
2. From your experiences, does a colostomy help to allow for healing of the fistulas and abscesses?
Hi Madelein,

Everyone's experience will differ but here's the salient points of mine;

I had relapsed and was progressively getting worse without any action from my original gastro team until I eventually started getting abscesses. First of all it was down below, so I had to do the seton thing which I was very unhappy about. I asked to get rid of it and seemed to carry on ok (as far as one can in relapse mode).

Anyway, I think a year may have passed of being very ill, but managing to function. My aim is always just to be able to go to work - even if I drag myself there - so I just let the relapse slide further and further until I ended up with another abscess on the site of a previous anastomosis. After antibiotics and drains aplenty, I wasn't very happy about it but surgery to form a stoma but it was the only way I was going to walk out of hospital again. (By this point I had a new gastro team in London who looked a bit more proactive).

One very important point: The original surgeon I spoke to was more or less going to remove everything so the stoma would have beeen irreversible. The second said that he would retain everything he could to allow a reversal to take place. Second opinions are very valuable!

Post-surgery there is a lot of support. I wasn't allowed to leave hospital until I could use and change the bag myself (which is very easy). I have a nurse in my area who I can contact anytime by phone if I have any problems and she'll usually have some extra gadgets or products that help. The weakest link for me was my GP who just couldn't seem to deal with the prescription requests from a third party. (You essentially contact a company directly for your supplies and then they request the prescription... In Britain you also get a medical exemption certificate, which - from memory - entitles you to free prescriptions for 10 years at a time). My advice is to try and find a GP with an electronic prescription service.

Physically, it's all very easy (apart from the odd leak or skin irritation here and there, but these are generally pretty easy to solve). The difficulty for me was the psychology of it. The only positive I had from it was that I could go back to work but I was quite terrified of everyone knowing about it. This meant that I was constantly distracted by trying to hide any evidence of it (generally a bulge under my clothes or noise, etc.). Again, there are products to solve these issues (belts/ waistbands/ etc.) but I could never seem to get over the fear of it. I hate being trapped in little meeting rooms with people - especially around lunchtime - in case I make a strange noise. The funny thing is, after two years nothing ever really happened like that, but it still distracts me. I tried an approach of beginning to tell some of my friends but I didn't find their reactions, attitudes, or just their knowing to make anything easier in that respect.

To answer your original question, I don't think you can prepare for it. It may come off as incredibly cliched, but you do just have to take it one day at a time. It's good to find someone that you can explain the issues you face to. For me, it was the girl in my HR department - but really what I think it comes down to is that once you vocalise a problem to someone you feel duty bound to find a solution. For example, once I found that I was becoming more socially anxious, I explained the situation to HR and with only really a kind few words of support I became quite determined to force myself into social situations with the expectation that I would begin to relax more with time.

All I can say for the second question is 'yes - it worked for me'. I've had a bunch of tests recently in the run-up to getting a reversal and everything that was in extremely bad condition previously seems to be completely normal now. I have suffered for a while now with a number of extra-intestinal manifestations, which seem a lot more difficult to control but I have been described as being in 'deep remission from the intestinal perspective'. It should be noted though that as part of my surgery the offending abscess was completely removed. I'm not sure where I was in terms of abscesses/ fistuals further down - but at the time it was described as 'being in a very poor state'. Presumably these issues have more chance of healing once the back end is allowed to rest without the continued interruption and infection from fecal matter.

Hope this helps.
01-13-2018, 01:58 PM   #770
Madelein
 
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Hi Dapper

Thank you, it does help. You have touched on quite a number of questions/concerns I have relating to work and sitting in meetings most of the day.

Madelein
04-27-2018, 06:36 PM   #771
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HELP PLEASE I had a temp stoma in place following some major surgery taking out part of my colon and in another spot part of my illium. I have a problem and was wondering if anyone might know what to do cos medical staff seeing me don't. The resulting wound once the stoma was reversed will not heal - 4 months down the track I still have a 5cm x 1cm sinus hole that shows no sign of change after it healed from 9cms deep in the first couple of weeks. It is being packed, not packed, packed every day, left for 4 days - nothing works. There is no infection although it was badly infected requiring hospital intervention to begin with. Has anyone got any experience with anything similar? I'm at my wits end - it hurts!
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04-27-2018, 09:04 PM   #772
Susan2
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Is it still an open wound, seeping? If so, have they tried packing it with an alginate (seaweed) dressing, like Kaltostat? After they removed my colon, rectum, anus and a whole lot of flesh, the hole was packed every day with Kaltostat and it healed slowly, but totally cleanly, with no sign at all of infection. This type of dressing is quite expensive but does an amazing job.
04-30-2018, 03:45 AM   #773
Dapper_Dan
 
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HELP PLEASE I had a temp stoma in place following some major surgery taking out part of my colon and in another spot part of my illium. I have a problem and was wondering if anyone might know what to do cos medical staff seeing me don't. The resulting wound once the stoma was reversed will not heal - 4 months down the track I still have a 5cm x 1cm sinus hole that shows no sign of change after it healed from 9cms deep in the first couple of weeks. It is being packed, not packed, packed every day, left for 4 days - nothing works. There is no infection although it was badly infected requiring hospital intervention to begin with. Has anyone got any experience with anything similar? I'm at my wits end - it hurts!
Hi Jenny T,

I'm sure it has already been considered, but if you are on immunosuppressants or prednisolone the healing will probably take longer. The same goes if you are deficient in vitamins, etc.

Mine took about 2 months to heal. I had it tended to everyday by a nurse during that time.

I believe the reason they don't close it surgically is to avoid an abscess forming underneath. Perhaps there is an underlying internal issue - have they done any CTs, etc to see what's happening inside?

Dan
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