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Stoma Support Group

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 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:
Are you using a convex or flat wafer? Do you use any paste or barrier rings?
 
Hey ya'll. I've had my stoma now for almost 2 yrs. I love it. Well you know not the fact I carry a bag and few occasion my bag leaks in public (embarrassing eeek) lol. But I love how I'm back to my "normal" self again. I just got back from a road trip PA to FL that's 20 hrs in the car and I did great!! Yaaay. Also I actually enjoyed my vacation. There was no hours on the toilet instead of pool time and no worries at all when I went to the beach. I've gotten the changing of the bags on lock and I've learned which supplies works for me and which doesn't. I'm still trying new things however. Looking for a smaller wafer one that's not so noticeable. Well noticeable to me bc according to my family it's very discrete. Thanks ya'll for being given here!
 
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?
 
Spingirl: Hey :). Yes they were avoidable. I pushed for another day when usually 3-4 days is the max for me before changing to a new one. And it was more the odor than the actual mess. I have a colostomy which means the incision is at the end of my digestive system at the sigmoid colon so my bowels are pretty normal which is a lot easier to handle emergencies vs an ielosotony which is more of a liquid bowels. It takes time to test your limits and as for the embarrassing moments. Girl, I've had them all. Before my colostomy I was incontinent and had accidents all the time. Now that's embarrassing. Grocery stores, malls, even out with my friends I didn't make it to the bathroom right away or waiting in line and next thing you know. ... Yup I crapped in my pants! I know it's horrifying the thought of having a bag. But I spoke to a nurse that specializes in patients like me who's about to have one and she prepped me for everthing! I'd strongly recommend having your surgeon Dr recommend one for you. And honestly this forum helped me vent my fears and all of my concerns with support and how it was a success for them. Stay focused on the positive. Wishing you the best! :thumleft:
 

UnXmas

Banned
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?
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.

If you're doing something where you really don't want leaks, you can put all kinds of extra adhesives on. This tape is my favourite: https://www.charter.co.uk/Charter/coloplast/brava/rings-paste-and-tape/brava-elastic-tape/

You can even put multiple pieces on so if you do get a leak, it will take much longer for it to happen. There are also adhesives you can apply to your skin before sticking the bag on.
 
Yes, this forum is awesome and THANK you for sharing I am happy to hear the more details :) When I am in a flare - I actually will wear a Depends if I know I am going to be somewhere that i can't get to bathroom in a hurry. Although I have to say - when I am most worried is when it doesn't happen. I think because I have the Depends on I sort of calm down and it doesn't happen. I've had car rides where I can't even speak for fear of losing it. My husband actually bought me a little portable toilet for a gift once Most women get diamonds. Ha - seriously I loved it. We haven't used it though. Also - I am going to try a support group before doing it just to ask more questions. Unfortunately...I would have to have the ielostomy. Funny thing is that I feel better now than I have in years and if it wasn't for the strictures...could probably live with it...ahhhh...Thank you again for following up! It really is just so helpful!
 

UnXmas

Banned
One thing I found with the ileostomy is the lack of urgency. Even if I have diarrhoea (i.e. high volume, watery output) it takes an hour or more for the bag to get anywhere close to full so you can take your time getting to the bathroom. And if you have really high volume output and still want to sleep through the night without getting up to empty it, you can get special night time bags that drain like a catheter. I've never had to use one but I know they exist.

I find my ileostomy much easier to manage than bowel incontinence. Not just because of frequency, but urgency, ease of managing accidents, etc. it's all better with the ileostomy.
 
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!!
 
Hi all,
Doubt anyone will remember me but not been here since May 2013, found the site and my password and here I am with my Jan 2013 ileostomy and Parastomal Hernia.

Looking forward to coming here more often.
 
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Hi all! I had my surgery last Saturday and got out of hospital today! Everythig is going fine so far. They removed the colon, rectum and sewed the anus. That last part is what hurts the most but I tought it would be worse.

The surgeons and GI are all happy about the stoma so it sounds good to me!the worst part is waking up during the night in need of pain medication. Also I could not pee during 2-3 days after the surgery, that was stressfull but now it's alright.

I'll keep you posted on how it's going in the next days.

Have a nice weekend!
 
Boussole so glad to hear things went well! I hope you are managing trying to walk around bit by bit. Amazing you got out so fast! My daughter had her surgery july 15 & went home on the 22nd. How are you managing the pain? My kid is now only on tylenol. So glad!
 
I'm taking Morphine and Tylenol. I feel it is going to be hard to get off the Morphine. How was it for your kid? I hope she's doing alright and she's feeling good with the stoma!!! When we're young it seems easier to get better. Being 23 years old helps me a lot I think :)

My family and friends all want to see my stoma bag and thinks it's so cool haha - it helps!
 
She was off Morphine on day 3. They push the kids off as fast as possible. She was on oxycodone for 2 days, then at about 1/2 Tylenol 1/2 oxy for another day, then Tylenol ever since. Now that she is home she is taking it 1 to 2 times a day, but otherwise is pretty pain free, just sore, especially when she tries to do things.

It is cool people are asking to see the bag! Takes the stigma out of it. Hope you have the opaque bags. At discharge my kid had clear and she definately didn't want people to easily see her stuff!
 

fuzzy butterfly

Well-known member
Hi all I had an ileostomy 17 months ago and a reversal in march.I suffered bladder problems as I couldn't wee just kept retaining and having to have it catheterised.Ended up coming home with a catheter in for 2 weeks.All was well after that, very little pain, scars healed really well and quickly.I did feel like a wet dish cloth for a while as I was really very poorly pre OP and weak as a kitten.I was off work for around 3 months after my OP. I work at a garden centre and have a lot of heavy lifting to do, so had to take it very easy for a while. I am now 4 months post OP of my reversal and have been back at work for 3 mths
 

fuzzy butterfly

Well-known member
Oh crikey why are send buttons so close to others you are trying to use lol.As I was saying! I have had quite an easy time off it really compared to some.I've had some leaks at work when I still had my bag but lucky not to many 3 ish I think? .my saviour was Stomahesive paste worked great for me with l leaks and soreness around Stoma.Touch wood I'm doing well at the moment, and wish all here the very best luck with all you are dealing with.I hope you all keep smiling its the only way to go :) IM here for advice or just a chat if you want ... Best wishes to all
 
Wow, docs here seem to keep the patients way longer in Morphine.

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.

And I heard many people who had their rectum sewed and had lots of difficulties with it and I'm quite afraid about it. Any tips? Should I sleep on my side? Try not to seat to much during the day..?
 

fuzzy butterfly

Well-known member
Hi boussole you should be able to bathe as normal, just take extra care to dry gently near your stitches, and preferably only stay in the bath for less than 15 mins, just shower as you normally would.if you can allow some time without underwear to allow air to the stitches and ensure you are properly dry before putting on underwear and clothes.You can use an inflatable ring to sit on (or swim ring) or a special one, see
your colorectal nurse.This will take the pressure off your stitches, maybe sleeping on your side will help you too! Also you can bathe your bottom using some warm salt water to help healing. Just dab a soft cloth in the salt water and dab gently around the area and allow to dry, if possible do 2 times a day. This is general advice so try and check with your nurses/docs.best wishes.
 
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.
 

DJW

Forum Monitor
Hi and welcome.

I've only flow in 4 seaters so not much help .
BTW, no issues with small planes.
 

fuzzy butterfly

Well-known member
Hi I haven't flown my self but I believe you should be ok.look on this site it gives you info on flying. www.colostomyassociation.org.uk
and have a great holiday!! :)
 

fuzzy butterfly

Well-known member
Hi PS when you click on site then click on information then travel advice(in blue on left hand side) then you can download a pdf with loads of advice!!
 
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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.
 

fuzzy butterfly

Well-known member
Hi Rcb104 IM from the UK,but I think you should be able to use and get the same or similar products. I found that Stomahesive paste worked best for me, it comes in a tube like toothpaste. I was told to use adhesive remover to take off the bag, then wipe around stoma and area where bag fits with plain warm water on a soft cloth(not to use soap as it can affect how it sticks) then dry area making sure it is really dry, then I applied the stoma powder, dusted off the excess.I put paste around the inner hole of the flange,just squeeze tube gently to leave a smooth piping around the hole.Now in your case you would also need too squeeze some on to your crease to help fill the gap.Then simply apply your bag.Hopefully this will help, but always ask you're a stoma nurse and check what she/he thinks of any tips you want to try. Good luck!!
 
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DJW

Forum Monitor
You've got the steps down pretty good. Well done!

A couple of suggestions that may be helpful.

1. Leave about a 1/8th inch gap around the stoma if you're not already doing it.

2. My nurses pour the powder on also. If I'm standing up I can tilt the powder bottle so a small cloud of poweder dust comes out. Then dab with skin prep. The results should be the same so it may not make a difference.

In my 30 years with this ileostomy the first month after any ostomy related surgery is a challenge. I'm more prone to leaked. You're stoma is still changing. It will get better.

BTW, I may get 1-2 leaked a year. I go about 5 days.

I hope this helps.
 

fuzzy butterfly

Well-known member
Hi Rcb104,I forgot to say apply for all the free samples you think might help so you can try as much as possible to see which helps best :)
 

DJW

Forum Monitor
I forgot to mention:

It is important to have clean skin. I don't use powder of skin prep unless my skin is irritated.
I'd suggest not using powder or skin prep to see how things go on your next change.
 

UnXmas

Banned
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.
Both the adhesive remover and the powder could interfere with keeping the bag stuck down.
 
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!! :)
Cheers thanks.

Does anyone have any issues with taking meds and stuff on a plane? I'm curious because obviously I need to take stoma bags and all that in my carry on not to mention loperamide and mercaptopurine. Just wondering if I'll get any problems from security?
 

fuzzy butterfly

Well-known member
Hi fergmaster,if you click on the site I put on my earlier post it tells you all about that and all sorts of other travel stuff, you can download the pdf and all info is on it !!
 
Thanks to those that responded about my pouch sticking.

Today was a shower and plenty of good warm water to take off any old residue. Light powder where skin is irritated then sure prep spray. Apply ring that resembles a gasket. The ring had a low spot in it where my crease is. I had some stick puddy made of same material as ring. Pinch off a piece flatten it out and filled in where things were fairly level for the convex pouch to adhere to. 3 hours later things feel secure. Gonna put it to test working small jobs around house tomorrow.

3 wks since surgery but I'm learning and not afraid to discuss with others about ideas.

Thanks for all the tips
 

fuzzy butterfly

Well-known member
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!!!
 
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 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.
 

fuzzy butterfly

Well-known member
Ah! Ok,I must say I found the paste easier than the rings, strips etc, and it helped me to have less leaks.its worth a try you will find the right way that works for you at some point it can
be a little tricky at first but you will get :). It

took me a few months to suss it out!!
 
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.
How is your daughter doing, Supportivemom? I hope she's alright!
 
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I have my appontment next week to take off the stitches. I once read it hurts really bad and I do believe it as it is a very sensitive area. Do they give something for the pain ? How long does it take to take them off?

I know it's quite ridiculous to worry about this after going through a big surgeu like this but. I can't help but worry!!
 
Hi Rcb, I agree totally with UnXmas. Maybe the adhesive and the powder isn't helping the bag stick to your skin no matter how dry you get it. I was told the best way to heal irritated skin from leaks is to not put anything on it and perhaps switch brands. Every time my skin gets irritated mainly bc I sweat after working out and it's so humid out, I change bags more often and only apply the non sting skin prep and let that completely dry before putting on the wafer. I avoid the powder. Hope this helps. :)
 
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.
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!
 
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.
What about the hair dryer on cold or warm?
 
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!
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.
 
Boussole my daughter is not letting anything keep her down! She (against my recommendations) went skateboarding, has been traveling around the city & being an average teenager. Ave tried to explain its only 3 weeks post op but she feels great and wants to do all the things she hasn't the last few years. Today she meets with the stoma nurse to do a bag change all on her own.

We are already making jokes about the bag, thinks its hilarious it farts, and the only complaint is we have too many clear bags & cant wait for us to order the opaque bags
 

fuzzy butterfly

Well-known member
Hi supportive mum, just like to say I'm glad to see your girl is getting out and about, and getting to enjoy life again. Way to go girl, and best wishes for continued Health and happiness !!. :)
 
I'm glad to read it, Supportivemom!!! As she is a teenager, it's really good she can go back to normal life :)

And as I've been through this surgery as well with my parents being very helpful, I want to say congratulations to you to be there, supportive. It is so easier to go through all this with people around you.
 

fuzzy butterfly

Well-known member
Hi all iv got a scan coming up in September, involving swallowing a kind of radioactive pill thingy, I think its known as an SEH CT scan, has any one had this done before, if so what's it like? Any info welcomed..
 

fuzzy butterfly

Well-known member
Hi ok thanks,I was thinking similar , see if anyone else gets back on it and see what they think.thanks again...best wishes too you and your daughter
 
Hi SupportiveMom. Your daughter sounds like a true champion coming out strong from this horrible disease. Very lucky girl you have she can jump right into doing all the things she loves and enjoys doing. Having a great positive energy is half the battle, you know. God bless her and hope she conts to enjoy her life to the fullest. From one Crohnie with a stoma to another. :thumleft::applause::headbang:
 
Psyllium Husks

I have a high output stoma, and I'm considering my fiber supplement options. Many members of this forum have found Psyllium husks helpful for bulking up stool.

Has anyone with a stoma used psyllium successfully? Any thoughts on whether it might be likely to cause a blockage or might be a bad choice for an ileostomate? I am eating all the foods recommended to thicken output --- a lot.

Thanks everyone.
 

fuzzy butterfly

Well-known member
Hi bluesky, I used to have mainly watery out put when I had my Stoma, not much thickened it (mashed potato, chips did abit).I never tried husks but as they are a laxative, stool softener people get mixed results, so they may help or not, ask your gi docs to see if they think it may help you.best wishes..
 
Hi, im 38 years old, diagnosed with Crohn's in 2001, it came back in 2011, Im looking for someone to point me in the right direction or area to look on here...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 donit 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
 
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DJW

Forum Monitor
Hi,

I've had an ileostomy since my teens. I've remained very active.
Cycling, softball, ice hockey, etc. Never been an issue. I don't swim in the ocean...pealed the appliance off in 15 min.

A dirty environment isn't going to be an issue.

It gave me my life back.
 
That is very interesting about the salt water...I am surprised chlorine doesn't do that. I would have thought the other way around.
 

DJW

Forum Monitor
Me too. My appliances don't last as long as normal when swimming in a pool but I've never had one peel off while swimming.
 
Peristomal Pyoderma

Hi there:

Any ostomates out there have experience with peristomal pyoderma gangrenosum? I have a hyper-sensitive skin rash near my stoma and under wafer that may be diagnosed as early PG. I'd like to hear some true life stories--good or bad-- about the experience and treatment options. I'm finding it locally very painful.

Thanks a lot.
 

DJW

Forum Monitor
I had terrible problems with the skin around the stoma. Remicade was the only thing that worked.
Have you seen a stoma nurse, GI, or dermatologist about it?
 
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 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.
Now that I have my stoma, life is much better. There`s no sport I don't do and no limit to my life. I have energy and can participate properly in daily life. I haven't had my anus removed so maybe this isn't exactly comparable but my opinion would be to just have one surgery, be as well as possible going into it and have a positive attitude and belief you will make a full recovery. The dirty environment is something Im sure you can figure out a way to work around.
I work with an NGO and cannot travel with them which is really limiting career wise so I know its a tough call. But work is just part of life which Im sure you've learned by now and the important stuff is your 3 year old son.
Diet evolves and sometimes I can eat anything while other times it will decide not to agree with me. Its pot luck but Id rather eat what I feel like than feel like I cant. (I know not everyone will agree with this).

My advice would be to prepare yourself as well as possible going into the surgery, keep positive, and take the time after to really build yourself back up and back into activities to build your fitness.

The only limit a stoma brings is mental and that can be overcome. In fact, its handier not to have to use a toilet so often. if I was to give out about something it would be the lack of products specifically designed for fitness fanatics. Why they cant be more ergonomic and better adhesives is beyond me.

Best of luck
 
Hello everyone,
I am 23 years old.I was diagonised with crohn's in 2012, my condition was manageable with regular medication. But after 3 years that is now in 2015, my condition worsened i had severe obstruction due to with i underwent colon resection surgery on august 22nd after the surgery i had complications with the wound healing due to which i underwent another emergency surgery in the same week itself, in which the doc made loop ileostomy. After the ileostomy i am feeling better and i am recovering well. My GI has tild me to do a lot of physical activities so that i can gain my fitness back and the stoma reversal can be done soon.
I have started walking and i don't sleep in the day time. I have started doing all regular activities on my own.
I wanted to know other than walking what other activities can be done as i fear of hernia i am limiting my activities. Kindly share your experience if anyone has considered doing any physical activities and found it beneficial. I read really scary experiences of people after stoma reversal surgery. Has anyone gone through the reversal surgery it would be helpful if you share your post surgery experience, what are the issues should be taken care once the stoma is reversed.
Your experiences and suggestions will really be of great help to me since its the first time i have got the stoma. Thank you.
 

fuzzy butterfly

Well-known member
Hi anmonk, i had a stoma for 11mths and had it reversed in feb this year. I was of work for around 12 weeks as worked at a garden centre which involed heavy lifting, so didnt want to go back to soon for risk of hernia. I took it easy ish when i went back and gradually started to lift more as i gained strength n fitness. I walked2 miles to work each day n miles while there lol. I have gone swiming also. I recently changed where i work do more hours n all at another garden centre lol. I have been great since first op and since the reversal. Just keep wounds clean n dry and take it easy for a while. If you have any problems tell your doc asap. Hope you will be too !
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.
 

fuzzy butterfly

Well-known member
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.
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 ..
 
Thanks for sharing your experience mandyk. Now i kind of have a picture of things after the reversal surgery, reading your experience was helpful to me :)
 

fuzzy butterfly

Well-known member
You are welcome, if you want any more info, please ask and i'll do my best to help if i can, take care and best wishes anmonk..
 
Has anyone kept a temporary (loop) ileostomy long-term and kept their colon and rectum intact but not functioning? Any thoughts on health risks and benefits of retaining a colon and rectum that are not in use? My doctor suggested that this is a possibility for me.
 
Hello bluesky,I have undergone surgery for loop ileostomy...my colon ispartially removed but the rest is left intact...my colon and anus is intact but not functioning, it's been one month...the main problem is water absorption and few people have issues of gallstones due to insufficient water intake. I have not faced much problem with the ileostomy, in fact I am feeling normal cause I can eat everything as before and I need not worry abt visiting restrooms frequently.
 
I have a loop ileo and have a J-pouch formed from small intestine, though have chosen to hang on to the ileo instead of having it reversed. I no longer have a colon, but do still have 5 cm of rectum and anus. I am coming up to my 4-year anniversary since surgery and have no plans to do anything other than keep my ileostomy. For me, t least, there is no danger doing this. My doctors have all said there is no reason I cannot keep it long term as long as it remains healthy. I have no additional risks. I pass mucus rectally several times a day, but no stool or gas. If your doctor says it is okay for you to do this, go for it. I LOVE my ileo!!!
 
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
 
Hi.
Sorry to hear your having so many problems, I'd say though that it's normal ( was for me ) for your Stoma to be very active so soon after surgery, it takes a long time for your remaining gut to settle down, and despite it being two months, it's still very early days.
Along with your pouches, what else are you using ?, any rings or pastes ?.
 
Hi...thanks for your reply....yes I am using a cohesive ring....I'm constantly worried about leakage and find that I'm having to drain the pouch very frequently....I thought that having a stoma was not meant to be limiting but I feel limited in all aspects such as sleeping, going out etc...my stoma would detach with a shower but I thought it was meant to be waterproof
 
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
Sorry to hear that you're having a hard time.

The beginning is going to be the most challenging - I'd say or took a year for my stoma to completely "settle".

A few things:

- if your stoma is flush with your skin or doesn't protrude much, try convex wafers. A light convex may even help with a protruding stoma. Talk to your stoma nurse before using convex wafers, as misusing them can lead to pressure sores.
- it may help to use a gelling product inside your pouch to help solidify your liquid output and make it easier to manage.
- there are other products like barrier rings that might help with leaks too.
- if your bag gets heavy before you can empty it, try a support belt to reduce the pulling that it causes.

Good luck!
 
I've found the few times I've used a skin barrier spray, it's made the pouch stick very strongly, so much so that I've had to use an adhesive remover to get it off, might be worth a go, you should be able to get a free sample to try.
A gelling product is a great idea, I used them for a while when I first had my Stoma, again, you should be able to get some free samples to try.
 

annawato

Moderator
Staff member
Hi Hope123, The first few months with ileostomy are very trying but things do start to settle down. I had nightmares with mine in the beginning. Call all the companies that supply ostomy products and get them to send out samples that may suit you - the people you speak to are trained to help and are very sympathetic. It may be the brand you are using is just not suited to you. I've never had success with rings and instead use convatec paste which I apply directly to the pouch in a ring around the hole. If you look at a pouch that has leaked you may be able to see whee the leak starts and then apply paste just in this spot. I also found using a soft convex pouch helpful even though my stoma is not concave and I wear a belt that clips onto the edges of my pouch. I think it is convatec too. The other thing I love is the elastic tape you get from Coloplast. It is very soft elastic wings that you wear around your bag to provide extra security.
i also had, still have, a very overactive stoma. There is some great info in the sticky thread near the top of the stoma subforum that will help with ideas for thickening output and also helping with managing everything else. Let me know if you dont find the info you need and I'll try and help some more here. Good luck, you will get there,
Annna
 
Hi guys,
It's been 3 days since my loop ileostomy reversal surgery...my GI told me to take liquid diet.the surgical pain is not much. My main problem is watery stools, the frequency is 10 to 15 Times a day...doctor says it will subside in sometime...
Can anyone tell me how many days did it take For you to have normal motions after the ileostomy reversal?
 

fuzzy butterfly

Well-known member
Hi glad it all went well. I had watery stool for a fews weeks . I was on a normal diet the day after my reversal. I had to take loperamide to thicken mine up. Also you can end up having bile salts malabsorbtion which causes watery stools also.I had test for this in sept. I have this n take a satchet of Questran twice a day. Im mostly normal ish these days. 10mths later the urge to go can not give me much warning but otherwise it pretty ok now.
It is very early days for you yet so see how you go over the next few weeks. Then speak with your doc if no improvement. Best of luck 💕
 
Hello there,

I'm Aaron. Some of you might know me from the fistulas, fissures, and abscess group. I've been living with chronic perineal disease for the past 12 years. Remicade helped, but it gave me Hodgkin's Lymphoma. Beat that and then developed anal cancer within one of my fistulae. Chemo and radiation did not take care of these cancer cells so now they want to do an APR (Abdominoperineal Resection).

Anyone have this procedure? What was recovery like? My first child is due in about 3.5 weeks. The docs don't want to wait any longer than a month. I'm 32, you think I'll heal up enough if I have the surgery at the end of next week? My head is spinning.
 
The reality is that your health is the overriding priority. The baby's arrival could literally happen any time. If you agree the surgery must be done, then do it ASAP. From what I've learned the most common complication is ileus, which is when ur small intestines don't "wake up" and begin working. That necessitates a bit longer hospital stay. Otherwise the challenges are likely no mystery to you. Recovery and adjustments can be made pretty quickly. But timing wise...there's no guarantee when ur little one will decide to join you! For that reason I would advise to get ur surgery done pronto to address the life threatening cancer issue u r facing. It just sucks that you are facing this now. I'm sorry.
 
Wow, you're going through a LOT right now. I can't offer any insights into the procedure you're needing because I'm clueless, but I did want to offer my support. I hope everything just falls into place for you. I'll be praying for you.
 
Thanks @Salad_Shooter and @CD Mom for your support. I'm working my way through the decision-making process. Trying to get my whole health team to work together. It's hard work and I'm sure you all know what I'm talking about. Right now, I have accepted the fact that I'll need the procedure, but am still not sure where and when I will have it done. Working on getting a second opinion with MD Anderson and/or Mayo Clinic.

right now it's looking like I can wait until after my baby is born to have the procedure. Then my wife and baby will be able to accompany me to wherever I have it done.

I'm also seeing if my Austin-based surgeon has operating privileges at the hospital that my wife is giving birth at. That way I might be able to have the surgery without worrying about missing it, unless, of course he happens to be coming on the exact day I have picked for surgery.

What a mess.
 
Good to hear you are able to wait until after your baby is born to have the surgery. Hopefully some of the pressure has been relieved. Maybe a 2nd opinion at MD Anderson would clarify your surgical options. <<<hugs>>>
 
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