This is wear I get my headscarves from, they're great, always deliver exactly what you order, and a big range to choose from: http://deresina.co.uk/cancer-headwear.html
Its a separate test that doctors often check with Crohns.Is the albumin test included in basic blood tests or is it one they have to specifically request?
Are you using a convex or flat wafer? Do you use any paste or barrier rings?Hi, I am new to the site, had my stoma for 16 weeks, but had 2 other ops inbetween, so now I have a slightly deformed one. The problem is my skin around the concaved part burns badly. Any suggestions on what I can use to help the proble. My name is Pat by the way and I live in beautiful South Africa.:ysmile:
Hi, I've had an ileostomy nearly two years now. Most of my leaks could have been prevented, yes. The only time I was getting regular leaks (i.e. once every few days or so) it was because my stoma had changed shape. As soon as my stoma nurses switched me to a different bag, no more leaks. I also got leaks while I was in hospital one time until I found out the nurses were using the wrong wipes to clean my skin and it was interfering with the adhesive. Besides things like that, I'll have a leak maybe once every few months or so.chronzie girl - so glad to hear this. I am always happy to hear stories where it is all working out well. I don't have a stoma yet but it is in my near future. i just cry though when I hear about the bag leaking in public and how embarrassing it is. I know it is a small price to pay for better quality of life but that is what has me playing Russian roulette with my strictures and postponing. i am just wondering...on the occasions when it leaks - did you do or not do something that could have avoided the situation? I mean...if I am giving a presentation - will I be able to do something ahead of time to ensure that doesn't happen? Or is it just going to happen when it happens? Maybe wear Depends on top of it? Just to catch it if it leaks until you have time to get to a bathroom?
Good luck!Tomorrow is surgery day for me! I'll have a proctocolectomy. I am not happy about that -of course, but after years of being sick I guess it is for the best!!
Surgeons try to get everyone off of morphine as fast as possible, not just kids.She was off Morphine on day 3. They push the kids off as fast as possible.
Both the adhesive remover and the powder could interfere with keeping the bag stuck down.New on the group just now. I have an Illeostomy since 7/6/15. I have home nurse 2 days a week. She is doing good. When nurse is helping I get good result. But at 3 am when I develop leak I don't seem to think straight always something not right. I have a crease where the pouch fits over. Here are my steps when changing pouch at about 3 day mark. Any suggestions are more than welcome. The mental part is not a challenge for me as many in my family where a pouch.
Use adhesive remover as pouch sticks like u wouldn't believe unless it's near my crease that leaks. Now pouch is removed.
2 paper towels each of soapy , wet , and dry paper towels.
Where skin is irritated where leak occurs apply thin layer powder. Then sure prep. Then powder then sure prep. Then sure prep again.
Let dry. Will get tacky a bit.
Apply a ring of what reminds me of plumbers puddy. Get as close wrapped around stoma as possible.
Then apply convex pouch. Put on belt.
Probs that I could use insight on. Sorry I this is so new I don't even know proper terms on some things.
1. My crease is not covered fully by puddy like ring. I got just today and have not tried a stick of the same puddy like material to try to fill gap.
2. What's best way to apply small amount or layer of powder. Nurse usually squirts it on real good and blows it off.
3. Is adhesive remover hurting me from sticking better
4. I hold my hand over new pouch once installed but maybe not enough warmth to help ring and pouch sort of meld together.
5. I can never get all the sticky residue from old bag off. How does everyone get the skin clean totally for better piece of mind if nothing else.
I've about got this whipped as I think half is mental and half physical. Any suggestion welcome as have great insurance to cover cost and not to shy to call supplier for sample.
Cheers thanks.Hi I haven't flown my self but I believe you should be ok.look on this site it gives you info on flying.
and have a great holiday!!
I did exactly that. Put pouch on by 9pm and by 2am a leak. Well at least not in same spot. My crease runs from 3 oclock to 9 oclock if looking at me. After the xtra ring type material at 9 oclock position it leaked at 3 oclock position. Cleaned up new bag. A little extra puddy made like ring on bottom half. Applied after ring. Will see how this does. May try paste soon as its more conforming to shape.Hi Rcb another tip is you can use a hair dryer on a low heat setting to warm and help wafer to stick better.just use it for a couple of minutes after you put your pouch on hold it about 8 inches (20cm)away from the pouch.it may be worth a go!!!
I have had two friends recently have the sane surgery and they were on morphine for 2-3 days longer & they were adults. I am glad to have her off it though. Can't be good long term.Surgeons try to get everyone off of morphine as fast as possible, not just kids.
How is your daughter doing, Supportivemom? I hope she's alright!I have had two friends recently have the sane surgery and they were on morphine for 2-3 days longer & they were adults. I am glad to have her off it though. Can't be good long term.
That's okay... I flew, I'm here, it all went fine.ok no worries sorry I thought you wanted general doh!!! ;-)
I have flown with my stoma. No issues at all. Have a few bags precut in case you need to make a change on the plane (for any reason) since you will not be allowed to carry scissors with you, but other than that, the plane itself should not be a concern to you. I use a rolled up towel in the car as a wedge between me and the seatbelt, and I took it with me for on the plane. At the airport, I did go through the x-ray scanner and the screener looked at the x-ray for a bit longer than usual. I expected them to want to do a pat down, but I was waived through. I had my ostomy card ready that explained I had an ileo so that they could read it and I didn't have to announce to the world what the deal was, but I never needed to use it.Hi, not been here before but wanted to ask something, I've had a temporary stoma for nearly a year, but I'm going on holiday in a few days for the first time with my stoma. I was just curious what's it's like to fly with a stoma for those who've done it? Should I be careful of anything? (aside form the usual like bag leaks and stuff) Cheers.
What about the hair dryer on cold or warm?I'm wondering -I had my rectum sewed. It's sensible but I don't really feel terrible pain. Surgeons will remove the stitches next week. Until that time, they say to keep it dry. But I'm not sure how dry I can keep it. I mean, after a shower, I can dry it too much, -other way I'm going to break the stitches.
In the end I was patted down bc I stupidly forgot to take my phone out of my pocket... the guy felt inside the the top of my trousers and I thought he was going to ask me about my bag, but nothing! Maybe he knew what they were already? I suspect having got here without out any problems everything will go wrong on the way back.I have flown with my stoma. No issues at all. Have a few bags precut in case you need to make a change on the plane (for any reason) since you will not be allowed to carry scissors with you, but other than that, the plane itself should not be a concern to you. I use a rolled up towel in the car as a wedge between me and the seatbelt, and I took it with me for on the plane. At the airport, I did go through the x-ray scanner and the screener looked at the x-ray for a bit longer than usual. I expected them to want to do a pat down, but I was waived through. I had my ostomy card ready that explained I had an ileo so that they could read it and I didn't have to announce to the world what the deal was, but I never needed to use it.
I suspect you will have a brilliant time with nothing to worry about!
Hi Motohd, I nearly killed myself by delaying surgery. I had a total colectomy in 1994 and my first stoma aged 9. This was replaced with a pouch in 2003 and I spent the next 7 years in and out of hospital (7 month stays) and 3 TPN stints for longer than 6 months each. Three stomas in between. All because I wouldn't accept a stoma. I wanted to be without one. In 2011 I had some resections and now have a permanent end ileostomy. I was on Infliximab but am now on Humeira. Life without a stoma was such a struggle. I had broken employment, no social life, little energy. I still tried to live live to the fullest but ended up really doing myself my harm in the long run.im considering surgury after a 5 year constant battle with Crohn's however my doc says we will have to completely remove my colon AND my anus right away, he says if we dont dont right away we would probably end up doing it eventually. Im very concerned about it as im a very active guy in the outdoors, i love baoting, swimming, especially love snowmobiling, hunting ect, i also like to do mechanic work for fun so im often rolling around on a dirty shop floor, i also have a 3yr old boy and im looking for real world experiences on anyone who has had this done to share thier quality of life after the colon removal. Thanks for any help!
Im also very worried i wont be able to return to work as i work in a dirty environment, very dusty and dirty
Hi it can vary person to person but i was going upto 18 times times a day for a few days, then it gradually slowed down, but there was urgency like got to go NOW . It will depend a lot on your own system some people are back to a couple of times a day quite quickly some take a couple of months like my self , but i was back at work in 12 weeks but i did not rush back as i wanted to be right 1st.. Now i go on average once a day maybe twice some days n can miss a day altoghter , but can still be urgent some times, control is getting much better all the time . i had my reversal in feb so 8mths on now. also i believe that the longer you have the ostomy the longer it can take as your bowel gets lazier as it were so if you have not had it long it could be a quicker time to get back to normal ish, but i cant promise that, it's just what i had heard.. take loperimide or similar can help to slow things down n you have less visits to the loo then .. Hope this helps, best wishes ..Thank you mandyk. Good to hear that you are doing well now. Can you tell what are the problems did you have after getting the reversal surgery, because i read a lot of people telling their bowel movements were unmanageable and it takes lot of times before things start getting normal. Is it true ?? I am sheduled for the reversal surgery after two months so i was anxious about it.
Sorry to hear that you're having a hard time.After emergency partial small bowel resection, I've been left with an ileostomy since past 2 months...it's taken over my life....multiple leaks...overactive stoma which is very liquid despite meds...tried different types of stoma bags but same problems....very upset about having stoma and don't know how I will manage this for the next year until it can be reversed....any advice please