• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Stoma Support Group

I hope I'm not posting in the wrong spot. If so I apologize.

I have my surgeon stumped. Now and then I have a dull achy pain where my rectum used to be. (I have had an ileostomy and barbie butt for 1 1/2 yrs). At one point there was even some clear leakage. It went away as did the pain after about 2 weeks. My surgeon said to come in next time it happens so that we can do an ultrasound. He couldn't find more than a pin size hole that it could have been draining from, and while he believed that I was in pain, could only assume that some fluid had been trapped in there after surgery. I have the dull pain again, and sometimes it wakes me up at night. I have just been sitting in an Epson salt bath and that seems to help temporarily.

Suggestions and/or advice?
 
Hi all,
I haven't been on here since about last June, I have been on the NHS waiting list for a colostomy and my date came through today, 2 June. I want to do my best to try to avoid a hernia and wondered if any of you had any advice for me?
I have waited for so long I began to wonder if I had imagined it!
I'm so looking forward to getting my life back again. I'm expecting some teething problems such as leaks while I learn, but going into it positive I hope will help:/.
 
I hope I'm not posting in the wrong spot. If so I apologize.

I have my surgeon stumped. Now and then I have a dull achy pain where my rectum used to be. (I have had an ileostomy and barbie butt for 1 1/2 yrs). At one point there was even some clear leakage. It went away as did the pain after about 2 weeks. My surgeon said to come in next time it happens so that we can do an ultrasound. He couldn't find more than a pin size hole that it could have been draining from, and while he believed that I was in pain, could only assume that some fluid had been trapped in there after surgery. I have the dull pain again, and sometimes it wakes me up at night. I have just been sitting in an Epson salt bath and that seems to help temporarily.

Suggestions and/or advice?
I have a similar problem, also with permanent ileostomy, my leakage and pain are from the vagina opening. The disease was severe in the rectal area, where it started with fistulas and many abscesses over the years.

I read recently that you can continue to develop fistulas in this area after surgery, called perinial disease, they can interconnect between the various organs and tissues, form abscesses or pockets that collect fluid and then drain, after some spasms (pain) occur caused by the fistula's leakage. I have complained about this for years, but nobody seemed to have any solutions.

Now, an effort is being made to close these openings, I suggest you discuss it with your doctor, an MRI can sometimes detect them. For the pain I found a very hot water compress with a wash cloth against your area while you lie down, will relax the spasm, as well as medication for back pain, which is also for muscle spasm relief. Good luck.
 
Hi all,
I haven't been on here since about last June, I have been on the NHS waiting list for a colostomy and my date came through today, 2 June. I want to do my best to try to avoid a hernia and wondered if any of you had any advice for me?
I have waited for so long I began to wonder if I had imagined it!
I'm so looking forward to getting my life back again. I'm expecting some teething problems such as leaks while I learn, but going into it positive I hope will help:/.
Just being careful in what and how you lift things really, I invested in support knickers from Comfizz which are supposed to help prevent hernias, and 18 months on after getting an ileostomy I haven't developed any, despite having to lift my 18kg dog up and down stairs for a month after she had a leg operation, I did take precautions though and wore a hernia belt .
There are also some Ostomy friendly excersises you can do, your Stoma nurse will be able to show you.
 
Just being careful in what and how you lift things really, I invested in support knickers from Comfizz which are supposed to help prevent hernias, and 18 months on after getting an ileostomy I haven't developed any, despite having to lift my 18kg dog up and down stairs for a month after she had a leg operation, I did take precautions though and wore a hernia belt .
There are also some Ostomy friendly excersises you can do, your Stoma nurse will be able to show you.
Hi, after an 1992 ileostomy, I developed a hernia with menopause and severe depression, due to gaining about 100 pounds in 6 months with meds.

I tried tight elastic undies but had to make a hole in the fabric for the stoma and bag to work. Can you explain how you did it without squishing your stoma flat?
Now I wear a belt 24 hours a day, but hernia is worsening and stoma is receding into it, about the size of a small squash. I have seen these belts with stoma protectors, sort of a hard plastic half cover on top of it. Thank you.
 
Hi, after an 1992 ileostomy, I developed a hernia with menopause and severe depression, due to gaining about 100 pounds in 6 months with meds.

I tried tight elastic undies but had to make a hole in the fabric for the stoma and bag to work. Can you explain how you did it without squishing your stoma flat?
Now I wear a belt 24 hours a day, but hernia is worsening and stoma is receding into it, about the size of a small squash. I have seen these belts with stoma protectors, sort of a hard plastic half cover on top of it. Thank you.
Comfizz underwear is designed for ostomates, but there are other companies, although if your in the UK I'd say Comfizz are the best, they have just enough elastic to support your stomach and the pouch without stopping any output.
There are two levels of support in the knickers, if you already have a hernia, level 2 knickers or the hernia belt would be the best.
The hernia belt has a hole for your pouch to fit through and then a removable guard, but the guard does cost extra, tbh, unless your doing sports etc, you don't need the guard.
 
thank you - that makes a whole lot of sense Grotbags. Wish I had know this before, stoma nurse did not help or GI specialist....or surgeon. LOL
 
Hello, I have a loop ileostomy due to a rectovaginal fistula, An I have a very bad case with a para hernia that hurts every day, I use coloplast products an they work well. But I still have stool come out of my rectum and blood but I had my 11th surgery with the gracilis muscle flap an now it's everyday, I see my Dr's on the with of this mo. But an wanting to know if this is normal to happen everyday? Thanks an would love to know if anyone is experiencing this.....
 
New

I just had my colostomy placed in May. I am looking for some support and some advise. I seem to be leaking through every product I try. Any suggestions?:confused2:
 
I just had my colostomy placed in May. I am looking for some support and some advise. I seem to be leaking through every product I try. Any suggestions?:confused2:
Can you give us some more details about the leakage.

Are you always leaking from the same place around the base plate? If so, is there a dip or other irregularity in that area? You might need same paste to fill in or smooth out the surface.

Or does the whole base plate lift off? Different brands have different adhesives and finding which one suits you can be a matter of and error.

Is your stoma either protruding a great deal or retracting and dropping down under the surface? (I need to use a convex wafer because my stoma retracts.)

Do you have an ostomy nurse? If so, make use of her/him to discuss your problems.
 
Coloplast products are my best friend. Me my daughter an husband like to write positive messages on my bag to remind me to stay positive. I have a para hernia that is massive an painful but the Dr won't fix it until I have the reversal surgery. When i contacted coloplast the first time they sent me a nice sample package with a small bag to carry it all it is really great.
 
Hi i had leaks from the base plate. I found convatec stoma adheshive was really good. Also you have to get the right space around the stoma on your base plate. 1/8th of an inch is recommend. It is a trial and error situation at 1st but you will find what suits you best. The more you become adept at changing you pouch, the less leaks you get. A tip to help secure the pouch better is to place your hand over it for a few mins after to warm the adhesive on the base up thus making it stick better. Or a hair dryer on low heat to warm it for a min. Keep the drying moving tho dont leave it blowing on one spot for long. Just as you would doing your hair.
Best wishes 💕
 
This is an excellent publication from the UK colostomy association regarding rectal discharge following stoma surgery:

http://www.colostomyassociation.org.uk/_assets/File/pdf/Bookets%202013%20New%20Address/rectaldischarge_021.pdf

Time to move on.
I'm reading the full thread and found this very helpful link outdated so heres
the link
http://www.colostomyassociation.org.uk/_assets/File/pdf/Bookets 2013 New Address/ca021_04v0r00_rectal_discharge.pdf

hope its ok to update the link DustyKat
 
I'm new with a stoma- loop with a rod- just 10 days. All seems to be going well. I was released from the hospital today. Just one question.....I feel the need to fart. When I went to hospital I had a small hemorrhoid. It is still there and I feel the gentle pressure. Do I need to release gas, or is it simply the hemorrhoid? I haven't applied any creams yet- have to look for some.
 
Hi :)

I think a lot of people get this feeling. If you've still got your large intestine, it will still be producing mucous and some of this may pass. I'm four and a half months in and still sometimes get the feeling that a bowel movement is coming. If it gets uncomfortable speak to the consultant, surgeon, or a stoma nurse.
 
Hi and welcome.... i agree with emmalou.. i had wind that passed and some mucus for a while after my ileostomy. It is quite common tho noone told me and i freaked a little when i passed a bit of poop the 1st time 😨. Hope all goes well for you and things improve no end.
Best wishes 💕
 
I have been using a new product for the last few days , its called Na 'Scent , its a ostomy odour control liquid and it actually works , I mean when I burp my bag in a room with my family people dont run screaming and gagging anymore , when I empty my bag there is no bad smell at all ,
Its the best money I have spent in a long time and would recommend it to anyone to try , you can order a free sample from their website but I took a chance and just bought the 12 oz bottle ,
This might not work for everyone but so far it works for me .
 
Big hello from Jersey. Welcoming everyone's idea on coping and management of the stoma. Recently became a victim of losing colon and ending up with a
bag to poop in. I find no joy in having this thing hang off me or wrapped around me in belt and welcome ideas and comments on survival. it sounds like a wonderful group.

My main question:
has anyone considered a hook up , instead of being stuck with a bag all your life? i'm going through the pros and cons of it. can't get over on diapers.
Thanks in advance.
 
Last edited:
My main question:
has anyone considered a hook up , instead of being stuck with a bag all your life? i'm going through the pros and cons of it. can't get over on diapers.
Thanks in advance.
Howdy hey! I had my colon removed and a J-pouch formed, with the idea of a hook up after 6 weeks. I wanted nothing to do with a bag! However, when the 6-week mark came, I didn't want to start over with going to the bathroom 10-15 times a day with a J-pouch, and I LOVED my freedom with the bag. It's been 5 years and I still love life with my stoma.

I see you have Crohn's rather than UC. Those with Crohn's are generally not candidates for a hook up with an internal pouch because of the chance of more disease developing anywhere in the small intestine.
 
I have lived on The Bag for 16 years now. Its definitely a game changer and life is restricted to a degree. I still live rural, heat my house with wood that I have to cut, split and pile myself, it all just takes much longer to do.
I was hoping for a reversal, but the doctor said that there was too much damage done by Crohn's to my rectal area and with it being active it was decided to just live with it.
There's a huge list of challenges that come with living with it. Just trying to keep the Bag on without containment breaches is challenging enough. Then there are the rash issues, and 'going'. The financial challenge is another, colostomy supplies don't come cheap.
However, life is much better with the Bag and with Crohn's under control life is not all that bad.
Crohn's patients cannot usually have a surgical pouch due to the likely hood of Crohn's developing and taking over the site. Crohn's is often recurrent in areas that were surgically disturbed such as resections.
 
hey guys
thanks for prompt replies.

I never would of went for the j pouch. making something out of a diseased organ just doesn't sound right.. the possibility of hooking up to rectum next year is on my mind. wondering the fall out after hook up?? will i be able to teach the butt hole how to evacuate when on toilet rather than in some social night event? good grief! diapers?? at least with bag on, u see everything and feel when to relieve yourself, no external smell.

yes bag has some containment issues.. That is now history by changing the wafer weekly..

what has been your experience with this vent on the bags?? I tired convatac, hollister.. they dont vent, gas engulfs the bag and swear an alien is coming out of me when it balloons. I just can not get mine to vent.

whats up with that? what worked for you? much appreciated to hear your comments/experience. thanks.
 
I'm new with a stoma- loop with a rod- just 10 days. All seems to be going well. I was released from the hospital today. Just one question.....I feel the need to fart. When I went to hospital I had a small hemorrhoid. It is still there and I feel the gentle pressure. Do I need to release gas, or is it simply the hemorrhoid? I haven't applied any creams yet- have to look for some.
,

hi eastcoast, i felt same way, in fact while in hospital i thought i needed to move bowels. it felt so real i thought i was gunna take a dump in hospital bed. there was mucus. there was the need to pass gas too. all of that has subsided now 4 months post op. pardon the pun but this shall pass. the feeling is normal and even though there's no colon, i still have a b.m. so i go.. and mucus comes out. a tiny bit and dr says its normal for the empty cavitiy in body to need to drain...I "go" once a month maybe. so the sensation to fart or have a b.m. is normal in my experience. good luck.
 
I have Crohn's and did have a j pouch but it only lasted about 6 months before they had to take it out and go with the bag for life.

I had issues also with venting and just did not like the vented bags at all. Now all I use is bags with no vent but I had to cut out a lot of foods that made me gassy.

When I first had the bag I did struggle with depression knowing I would have this the rest of my life. Now though I would say it has made life much better. Even with the some of the issues like Bufford mentioned there are some of those nice little advantages. I don't miss the days of being in a store and almost or literally crapping myself because I didn't make it to the bathroom in time. I can empty my bag and wash quicker than I can urinate though at times I do miss the good old sit and read lol. It has just made my life better.

A good scent killer is a must in my opinion. I have mainly used the M9 by Hollister but have also used Na 'Scent. You can get a couple free samples of Na 'Scent directly from their website.

Another thing to consider is a support belt. I had an issue of getting a hernia right under my stoma mainly because I tend to lift more weight than I am supposed to. Now I have a belt that wraps around and has a hole for my bag to fit through and supports everything.

I know it might seem all overwhelming but hang in there and ask any questions, any at all and we will do our best to answer.
 
I tried the vented bags and found that they simply clog up when one is laying down in bed causing waste to enter the vent clogging it up rendering it useless. I simply use regular two piece systems and air off the bag as it fills with gas.
With time one develops a routine living with the bag and there are definite advantages to having one when one has to use public bathrooms these days.
 
Who here has Crohn's and has gotten an ileostomy? Has it improved your quality of life? Have you had other flares? Do you regret it? How did it effect your self image (I'm a 26 yr old female)? I've been in a flare (most of the inflammation in my colon) for over 3 years.
 
Who here has Crohn's and has gotten an ileostomy? Has it improved your quality of life? Have you had other flares? Do you regret it? How did it effect your self image (I'm a 26 yr old female)? I've been in a flare (most of the inflammation in my colon) for over 3 years.
I have Crohn's and have an ileostomy. It has improved my quality of life a lot. I'll admit at first I second guessed myself and thought maybe I did the wrong thing. It does take time to get accustomed to it. Now most of the time I forget I even have it doing daily things.

3 years is a long time to be in a flare and if you have been miserable most of that time I'd at least consider an ileostomy.

Like I said, it will take some time to get used to and there might be some depression but don't let that scare you, just be prepared. It will be a great thing in time in my opinion.
 
Who here has Crohn's and has gotten an ileostomy? Has it improved your quality of life? Have you had other flares? Do you regret it? How did it effect your self image (I'm a 26 yr old female)? I've been in a flare (most of the inflammation in my colon) for over 3 years.


I'm now 37 years old. I'm also female (for all my life lol). I was first diagnosed with UC and a few months later I had my colon removed and a j-pouch made. I was miserable. It turned out it was Crohn's. I had been sick all my life; I had blood in my diaper before I was 1. I applied for a really good masters program and got in. I knew I couldn't do it being sick like I was so I decided on the ileostomy. It was a mess. All the tissue around the j-pouch was bad so I ended up with a permanent ileostomy. I named him Stan and he wears diapers not bags. I, too, worried about self-image. All my life I had problems with self image. I thought it'd be terrible. It was hard at the beginning but I learned a little. I separated myself from the ileostomy. Stan and I work together. I take care of me and I take care of him. I don't like the word bag so I reframed it, diaper. It really worked. I've learned this is narrative therapy. So, do I regret it? NO. I still have problems though; I have Crohn's. Getting rid of the colon doesn't always mean things will never flare up again. I used to be self conscious of Stan. His first name was Kenny like from South Park. (Who killed Kenny?). I hated him but I'm far better off. I no longer sit on the toilet bleeding. I let something I was afraid of cripple my life for 16 years. Hope part of my story helps.
 
I'm now 37 years old. I'm also female (for all my life lol). I was first diagnosed with UC and a few months later I had my colon removed and a j-pouch made. I was miserable. It turned out it was Crohn's. I had been sick all my life; I had blood in my diaper before I was 1. I applied for a really good masters program and got in. I knew I couldn't do it being sick like I was so I decided on the ileostomy. It was a mess. All the tissue around the j-pouch was bad so I ended up with a permanent ileostomy. I named him Stan and he wears diapers not bags. I, too, worried about self-image. All my life I had problems with self image. I thought it'd be terrible. It was hard at the beginning but I learned a little. I separated myself from the ileostomy. Stan and I work together. I take care of me and I take care of him. I don't like the word bag so I reframed it, diaper. It really worked. I've learned this is narrative therapy. So, do I regret it? NO. I still have problems though; I have Crohn's. Getting rid of the colon doesn't always mean things will never flare up again. I used to be self conscious of Stan. His first name was Kenny like from South Park. (Who killed Kenny?). I hated him but I'm far better off. I no longer sit on the toilet bleeding. I let something I was afraid of cripple my life for 16 years. Hope part of my story helps.

It does help, thank you! The biggest thing holding me back from living life fully right now is being prisoner to the closest bathroom. I think an ileostomy would definitely decrease that problem, though I definitely realize that it will not cure crohn's, and I will likely have other flares. But I would probably never crap myself again (which I have come close to many many times and achieved a few times). If I decide to go this road it will likely be a permanent ileostomy because I also have a lot of rectal and anal issues. I have decided the best thing for me if it happens will probably be to just embrace it as a part of me and keep on keepin' on. Love the name Stan lol. Nice. I'm not sure how many more double doses of meds that don't work, and how many more months/years of being dependant on prednisone (which I despise) I want to try. Close to the end of my rope. And I'll put up with a lot before complaining. Did the ileostomy at least give you a little while with remission? My first flare I only achieved remission after a resection (at 13)...and Humira kept it mostly in remission for 8-9 years.
 
It does help, thank you! The biggest thing holding me back from living life fully right now is being prisoner to the closest bathroom. I think an ileostomy would definitely decrease that problem, though I definitely realize that it will not cure crohn's, and I will likely have other flares. But I would probably never crap myself again (which I have come close to many many times and achieved a few times). If I decide to go this road it will likely be a permanent ileostomy because I also have a lot of rectal and anal issues. I have decided the best thing for me if it happens will probably be to just embrace it as a part of me and keep on keepin' on. Love the name Stan lol. Nice. I'm not sure how many more double doses of meds that don't work, and how many more months/years of being dependant on prednisone (which I despise) I want to try. Close to the end of my rope. And I'll put up with a lot before complaining. Did the ileostomy at least give you a little while with remission? My first flare I only achieved remission after a resection (at 13)...and Humira kept it mostly in remission for 8-9 years.


Oh, it helped a lot. I'm having problems with abscesses and cyst. Most of my problems are coming from the surgery or birth of Stan. I'm in a very unique position. But it's so much better. I didn't realize how terrible my life was before Stan. We have our arguments but I had to learn about him and how to help him and change his diapers. The first few months with Stan were hard but still better. I don't have to stay in the bathroom if I feel sick. Stan wears diapers. :)
 
Oh, it helped a lot. I'm having problems with abscesses and cyst. Most of my problems are coming from the surgery or birth of Stan. I'm in a very unique position. But it's so much better. I didn't realize how terrible my life was before Stan. We have our arguments but I had to learn about him and how to help him and change his diapers. The first few months with Stan were hard but still better. I don't have to stay in the bathroom if I feel sick. Stan wears diapers. :)
Lol. That's what I try to tell my husband when he says he thinks I am looking at surgery as an end-all, and through rose colored glasses...no, I realize it will be a big change and adjustment, that there will possibly be complications, there will be more flares...but I feel like it will give me so much more freedom than I have had in many years. I can handle the pain and fever and fatigue. I can't handle nearly as well having to stay RIGHT NEXT to a bathroom at all times or it always being a concern. And I feel a little like we are prolonging the inevitable here. If so just do the dadgum surgery so I can move on to other things 😏. I think I will know which direction I'm gonna go within the next year. I'm seeing a new GI soon. Not happy at all with my current one. After two years he still would not consider surgery and just kind of brushed away everything I said. Now we're at 3 years. Still in the same boat. So we'll see where it goes. I think I am mentally/emotionally prepared for surgery at this point.
 
Lol. That's what I try to tell my husband when he says he thinks I am looking at surgery as an end-all, and through rose colored glasses...no, I realize it will be a big change and adjustment, that there will possibly be complications, there will be more flares...but I feel like it will give me so much more freedom than I have had in many years. I can handle the pain and fever and fatigue. I can't handle nearly as well having to stay RIGHT NEXT to a bathroom at all times or it always being a concern. And I feel a little like we are prolonging the inevitable here. If so just do the dadgum surgery so I can move on to other things [emoji57]. I think I will know which direction I'm gonna go within the next year. I'm seeing a new GI soon. Not happy at all with my current one. After two years he still would not consider surgery and just kind of brushed away everything I said. Now we're at 3 years. Still in the same boat. So we'll see where it goes. I think I am mentally/emotionally prepared for surgery at this point.


I'd start seeing a therapist. Get your mind ready for the change. I did. Then I put my foot down with the doctors. I wanted the surgery. Period. I have a wonderful therapist who has helped me through so many surgeries, dealing with doctors, and going forward in life. Now I lack 3 classes from completing my master's in marriage and family therapy. [emoji2]
 
I'd start seeing a therapist. Get your mind ready for the change. I did. Then I put my foot down with the doctors. I wanted the surgery. Period. I have a wonderful therapist who has helped me through so many surgeries, dealing with doctors, and going forward in life. Now I lack 3 classes from completing my master's in marriage and family therapy. [emoji2]

Gives me hope that you have overcome all of that. I know I will fight this until my dying breath. I'm not just gonna lie down and take it. I will do everything in my power to better my health. And just roll woth the things I have no control over. I do not like being a victim. And I refuse to be. Thanks for sharing with me. 😁I know people who have been in the same or similar boat are the only ones who can give me a real opinion on this. No one else is speaking from experience.
 
I too had to make sure I was near a bathroom at all times. I started to become a real hermit and not want to leave the house. My wife would have to about drag me out. Now I feel so much more freedom with my ileostomy.

There used to be a local UC/Crohn's support group near me that would meet once a month. It really helped me out but for some reason they stopped them. If that is something available to you you could try that. Like Cheesy79, I also have a therapist and I really think some kind of support like that helps so much.

Keep asking questions as this is a great community. I need to get involved here more myself.
 
I too had to make sure I was near a bathroom at all times. I started to become a real hermit and not want to leave the house. My wife would have to about drag me out. Now I feel so much more freedom with my ileostomy.

There used to be a local UC/Crohn's support group near me that would meet once a month. It really helped me out but for some reason they stopped them. If that is something available to you you could try that. Like Cheesy79, I also have a therapist and I really think some kind of support like that helps so much.

Keep asking questions as this is a great community. I need to get involved here more myself.

Thanks! I do need to look into any support groups close by. Would be a good way to make friends who understand the struggle. My husband is very supportive, but just not the same as talking to someone who has had a similar experience. He probably needs to find a "Spouse of UC/Crohn's" support group 😂. How long do you feel like it took you to adjust to the new lifestyle with the ostomy? Have you had flares since and how was it dealing with them?
 
My wife has said that exact thing, that she needs a spouse support group haha. She tells me she has no idea what it must be like but she sure tries her best to understand and help.

It took me a good year to really adjust to the ostomy but I think this is one part that will vary the most for everyone. I have had flares and it still sucks but is a little easier with stoma. No more sore butt from going to the bathroom so much but you really just deal with it like any other flare up. Hopefully with the ileostomy and stoma there are less or no flare ups though.
 
Thanks! I do need to look into any support groups close by. Would be a good way to make friends who understand the struggle. My husband is very supportive, but just not the same as talking to someone who has had a similar experience. He probably needs to find a "Spouse of UC/Crohn's" support group [emoji23]. How long do you feel like it took you to adjust to the new lifestyle with the ostomy? Have you had flares since and how was it dealing with them?


I live in a small large town. I hope that makes sense. We do have a group that meets once a month but it's not always the support group. It's sometimes educational. I would say visit those groups now. When I first got Stan, I was miserable. I'm trying to be honest. Luckily the hospital had therapy dogs. I had a golden retriever name Eli that saved me completely. He would get in bed with me and lay there in the hospital bed. He would do tricks. I was a miserable patient unless the dog came to see me. I hade home health care for a few weeks to learn how to change Stan's diapers. I didn't know how and I was to sick. It's a hard adjustment at first. I'm still trying to be honest. It takes a lot of learning and there's a learning curve. We do have a ostomy nurse in my town that has her masters in it. She's amazing and she's taught me a lot of things. Like eating marshmallows will slow down your guts. Since Stan is an ileostomy he makes liquid unlike a colostomy. I have skin problems. I always have. So I battled with finding Stan's size and making sure nothing got underneath the waffler. It was a disaster at first. I didn't have this group. I was alone. I live by myself, not married, my mother was killed in a car wreck, and just not a lot of help. Make sure you have a support group. I think the turning point was actually when I named him. I cannot tell you enough how much this helped. I think it probably had to do with my body image problems. Then I learned some tricks like: my skin would get bad. Stan wouldn't stop but I had to change his diaper. I put a tampon in Stan and worked around that. I was able to put on his diaper and go through the powder and skin barrier stuff without a problem. I actually kind of made a mistake and went back to school two months after surgery. It was my first year in my masters program and there were some issues. But I was surrounded by therapist and it ended up being helpful.

Flares: so doctors can be kind of jerks. Or they just do not understand. I've battled with the wound not healing from taking out my rectum and causing abscesses. And then that causing MRSA. Every time they've tried to get rid of the abscess, it failed. Anytime I've felt sick, the doctors think it's from the abscess and no one has ever said anything about flares! Until this last surgery. I finally got a doctor that would open me up and remove the abscess. I had gotten in so much pain so quickly and it was progressing really quick. I had to go above the head of my insurance and they finally let me go out of area. I'm on Medicaid so I called my state representative. They were great! And Medicaid was on top of things. I knew this surgeon and he had worked on me before. There was just an insurance problem seeing he was out of area. He also knew my brother. He was willing to open me up and do the full surgery to fix this problem. When he opened me up, he saw that the abscess was not the big problem. It was a huge Crohn's flair throughout my small intestines. Really this is the only document flare I've had.
 
Dang Cheesy79, that is rough but glad you came through it all. I totally forgot about the marshmallow trick. I will eat 1-2 big ones a little bit before I change by bag and it usually works great.

I also remembered a very important lesson I learned. If you do have the surgery you will have some incisions on your stomach/abdomen. The first time when I had the procedure I thought I was cleaning everything good but I got an infection and it was tough to deal with. The second time I had to have some intestine taken out and my stoma adjusted and I showered twice a day and used the surgical cleaner they gave me. So the lesson learned is make sure everything is clean, clean, clean.
 
I have been pleasantly surprised at how supportive my husband is after having my ostomy surgery. He read all the books that I had before surgery and was a voice for me while in the hospital recovering, asking the doctors and nurses all sorts of questions on the days that I was feeling overwhelmed. He even did my first bag change for me! Having him involved has made all the difference for me. We have some of the best jokes involving Bob.

I was homebound for years before colectomy. I worked solely from home. After getting out of the hospital, I took two more weeks off from work, but then got back to my job from home. I spent the next year getting adjusted to my ileostomy. It is quite a transition! After that, I went back to school and now I work in the operating room assisting surgeons. AND no one, not even my coworkers, know I have an ileostomy. Life can be sweet when you aren't stuck in the bathroom or always concerned that you might need one at the drop of a hat!
 
I have been pleasantly surprised at how supportive my husband is after having my ostomy surgery. He read all the books that I had before surgery and was a voice for me while in the hospital recovering, asking the doctors and nurses all sorts of questions on the days that I was feeling overwhelmed. He even did my first bag change for me! Having him involved has made all the difference for me. We have some of the best jokes involving Bob.



I was homebound for years before colectomy. I worked solely from home. After getting out of the hospital, I took two more weeks off from work, but then got back to my job from home. I spent the next year getting adjusted to my ileostomy. It is quite a transition! After that, I went back to school and now I work in the operating room assisting surgeons. AND no one, not even my coworkers, know I have an ileostomy. Life can be sweet when you aren't stuck in the bathroom or always concerned that you might need one at the drop of a hat!


Wait is your husband named Bob or your ileostomy named Bob? [emoji23]
 
I live in a small large town. I hope that makes sense. We do have a group that meets once a month but it's not always the support group. It's sometimes educational. I would say visit those groups now. When I first got Stan, I was miserable. I'm trying to be honest. Luckily the hospital had therapy dogs. I had a golden retriever name Eli that saved me completely. He would get in bed with me and lay there in the hospital bed. He would do tricks. I was a miserable patient unless the dog came to see me. I hade home health care for a few weeks to learn how to change Stan's diapers. I didn't know how and I was to sick. It's a hard adjustment at first. I'm still trying to be honest. It takes a lot of learning and there's a learning curve. We do have a ostomy nurse in my town that has her masters in it. She's amazing and she's taught me a lot of things. Like eating marshmallows will slow down your guts. Since Stan is an ileostomy he makes liquid unlike a colostomy. I have skin problems. I always have. So I battled with finding Stan's size and making sure nothing got underneath the waffler. It was a disaster at first. I didn't have this group. I was alone. I live by myself, not married, my mother was killed in a car wreck, and just not a lot of help. Make sure you have a support group. I think the turning point was actually when I named him. I cannot tell you enough how much this helped. I think it probably had to do with my body image problems. Then I learned some tricks like: my skin would get bad. Stan wouldn't stop but I had to change his diaper. I put a tampon in Stan and worked around that. I was able to put on his diaper and go through the powder and skin barrier stuff without a problem. I actually kind of made a mistake and went back to school two months after surgery. It was my first year in my masters program and there were some issues. But I was surrounded by therapist and it ended up being helpful.

Flares: so doctors can be kind of jerks. Or they just do not understand. I've battled with the wound not healing from taking out my rectum and causing abscesses. And then that causing MRSA. Every time they've tried to get rid of the abscess, it failed. Anytime I've felt sick, the doctors think it's from the abscess and no one has ever said anything about flares! Until this last surgery. I finally got a doctor that would open me up and remove the abscess. I had gotten in so much pain so quickly and it was progressing really quick. I had to go above the head of my insurance and they finally let me go out of area. I'm on Medicaid so I called my state representative. They were great! And Medicaid was on top of things. I knew this surgeon and he had worked on me before. There was just an insurance problem seeing he was out of area. He also knew my brother. He was willing to open me up and do the full surgery to fix this problem. When he opened me up, he saw that the abscess was not the big problem. It was a huge Crohn's flair throughout my small intestines. Really this is the only document flare I've had.

Wow, that is a lot to go through. And I have recently discovered that I am a dog person. 😁. I accidentally became the owner of a doberman puppy (she will be 2 in Sep), and I consider her my own personal therapy dog at times. She helps keep me busy and helps me not to focus on my own problems so much because I'm taking care of (and training) her. In fact she may have helped open up a passion in me for animal behavior/dog training that i didn't know was there before. I am very lucky (and grateful) in that I already have a lot of support at home through my husband and through family. Especially my mom. I am starting to realize now what my parents had to go through during my first flare as a 12 year old, dealing with insurance and doctors. It is a huge headache. And bills rack up so quickly especially when in a flare. This is technically my first time dealing with a serious flare on my own as an adult. I really appreciate now that my parents never let me see the stress I'm sure it caused them. I will be seeing my new GI today...we'll see how it goes 😕.
 
Wow, that is a lot to go through. And I have recently discovered that I am a dog person. [emoji16]. I accidentally became the owner of a doberman puppy (she will be 2 in Sep), and I consider her my own personal therapy dog at times. She helps keep me busy and helps me not to focus on my own problems so much because I'm taking care of (and training) her. In fact she may have helped open up a passion in me for animal behavior/dog training that i didn't know was there before. I am very lucky (and grateful) in that I already have a lot of support at home through my husband and through family. Especially my mom. I am starting to realize now what my parents had to go through during my first flare as a 12 year old, dealing with insurance and doctors. It is a huge headache. And bills rack up so quickly especially when in a flare. This is technically my first time dealing with a serious flare on my own as an adult. I really appreciate now that my parents never let me see the stress I'm sure it caused them. I will be seeing my new GI today...we'll see how it goes [emoji53].


Hey my two dogs are my life savers excepts my savior Jesus Christ. I have one lazy older Joshua part German Shepherd part pitbull and a new dog Duke that I adopted who is a German Shepherd. I think he's about a year and a half old. I live by myself. Duke is super smart and smells out infectious. He also can sense my emotions. I'm depressed and he wraps his arm and paw around my arm and puts his head on my chest. When I hear a noise in the house he gets up and checks everything. When I get anxious he tries to figure out what it is by barking at random stuff or whatever. I think dogs have a wonderful wonderful gift for helping people. I am a huge dog advocate. When I get my license to practice therapy, I am going to use a dog in therapy. I am just super glad that you have a dog. I think everybody should have a dog especially under the circumstances.
I forgot. My therapist is going to write a letter for Duke to become an ESA a dog. [emoji2]. I'll be able to take him everywhere.
 
hi,

just chiming in on the leak situation people are having. for most of us, as i have read, (and experinced myself) the beginning of leakage starts early as we get a handle on changing the wafer. and for some, as we get more experienced, the lesser leaks occur. my leaks are from gas. I literally blow the seal out when and if theres too much inflated gas causing ballooning and i happen to turn on that side in bed,, pop goes the seal indeed...and those filter/charcoal bags are useless. i have had the filter itself leak..

another leak occurs if the bag isnt snapped properly onto wafer.. u gotta hear it, feel it click on..otherwise you will wet and stink yourself..

i wear my bag sideways during the day with a special ostomy belt that is offered out there and at night, i wear it down with a strap around my waist and special knickers..

my question is does anyone use these special underwear/knickers that actually use a pouch built inside to trap the yuck mess that leaks? I went thru two knickers that saved the bed sheets..and trapped the waste inside the pocket. i found the underwear from ostomy secrets.com. at 25 u.s. bucks each, they better do something other than look good. anyhow, was wondering if there are users out there? and if not, what do u do when the leak occurs? how do control it? i had no idea these things existed. i wear them at night only cause i'm restless sleeper.

when yur bag inflates at night and u turn over onto it, there is nothing that is gunna stop leak. at least u can control the waste , keeping inside the pocket and not spilling out. this underwear can only be used if bag hangs vertically. let me know your thoughts.
 
hi,



just chiming in on the leak situation people are having. for most of us, as i have read, (and experinced myself) the beginning of leakage starts early as we get a handle on changing the wafer. and for some, as we get more experienced, the lesser leaks occur. my leaks are from gas. I literally blow the seal out when and if theres too much inflated gas causing ballooning and i happen to turn on that side in bed,, pop goes the seal indeed...and those filter/charcoal bags are useless. i have had the filter itself leak..



another leak occurs if the bag isnt snapped properly onto wafer.. u gotta hear it, feel it click on..otherwise you will wet and stink yourself..



i wear my bag sideways during the day with a special ostomy belt that is offered out there and at night, i wear it down with a strap around my waist and special knickers..



my question is does anyone use these special underwear/knickers that actually use a pouch built inside to trap the yuck mess that leaks? I went thru two knickers that saved the bed sheets..and trapped the waste inside the pocket. i found the underwear from ostomy secrets.com. at 25 u.s. bucks each, they better do something other than look good. anyhow, was wondering if there are users out there? and if not, what do u do when the leak occurs? how do control it? i had no idea these things existed. i wear them at night only cause i'm restless sleeper.



when yur bag inflates at night and u turn over onto it, there is nothing that is gunna stop leak. at least u can control the waste , keeping inside the pocket and not spilling out. this underwear can only be used if bag hangs vertically. let me know your thoughts.

I'm going to re-quote again something that I would like to bring up.

"I literally blow the seal out when and if theres too much inflated gas causing ballooning and i happen to turn on that side in bed,, pop goes the seal indeed...and those filter/charcoal bags are useless"

Yes. Yes. Yes. When Stan balloons, I call it the good year blimp. And his diaper has literally pop off one or two times. Here's the deal. Your intestines move every four hours regardless if you had anything to eat. So at night you tend to ballooning problems more. It helps to eat a few crackers before bed. That helps keep you from producing only gas. Well, it does me. And those filters... What is the purpose of them? They don't work.

My problem with leaking had to do with the skin barrier. I used Smith & Nephew spray. IT BURNS LIKE CRAZY. BUT IT'S CRAZY STICKY! [emoji1303] I also have problems with my skin reacting to any adhesive. So I have to use the powder. I apply plenty of powder and then I apply plenty of skin barrier spray. I get my hair dryer out and dry the skin around Stan (or the stoma) on low until it is real sticky. That makes for a great seal.

I've never used any of the underwear stuff. But I'd like to hear about it. I've pretty much fixed my leaking problems with how I put Stan's (my ileostomy) diaper on.
 
Controling the gas helped me a lot with containment breaching. I take a probiotic later on after supper with a snack, and another with breakfast or lunch.
Another thing I did which is more difficult, is to train myself to sleep on my side rather than on my stomach, however I occasionally still do and that is usually when I am in a state of deep sleep.
I use the Smith and Nephew barrier spray, and layer it on using a hairdryer to dry it. It works better than the 3M stuff that irritates my skin. I use the hairdryer to warm up the flange to make it stick to my skin better, and then tape the edges of the flange using medical tape. 3M Nexcare tape works best and holds the edges of the flange down reducing the need for the ostomy strap.
After gluing down a new flange, I sit down for an hour or longer to let the glue set up. Moving around too much too soon after a new flange install only reduces the lifetime of the appliance. So consider watching a show, or reading after gluing down a new one.
 
Had Crohns and abscesses for many years. Now have fistulas and extreme infection somewhere. Lost 12 kg wight (12% body weight). Need to have Iliostemy and various resection and maybe organ removal. Despite all of this I worry about the Stoma, it's not natural in my mind. How do you cope? Worried.
 
Had Crohns and abscesses for many years. Now have fistulas and extreme infection somewhere. Lost 12 kg wight (12% body weight). Need to have Iliostemy and various resection and maybe organ removal. Despite all of this I worry about the Stoma, it's not natural in my mind. How do you cope? Worried.


Hi Jambo,
I was exactly the same. The fear of the stoma. I became catatonic when told I had to have it done. I had spent the better part of 20 years having resection sand telling the surgeon to not wake me if he gave me a stoma.

My bottom was like a watering can, completely wrecked from fistulae and abscesses. I was on permeant antis, and was having setons placed and replaced every couple of months.

I got miss piggy (stoma) almost 4 years ago and she has really improved my life. I no longer have an anus. My bowel ends at my stoma, I no longer need to know where every toilet is, or not go out socially for fear of accidents. I don't like sharing about my stoma to 'outsiders' but have started to now.

I have travelled overseas, had beach holidays, cycling trips, been camping etc etc. my stone has given me back my life. I actually feel mostly normal now.

This forum is a great place to talk, ask questions you wouldn't dream of asking anyone else, and getting advice on clothing, accessories, stoma care, intimacy queries etc.

We have all been where you are, and with the help and kindness of stomates on this forum we have survived and now take living with a stoma in our stride.

A stoma is just replumbing. Not unnatural, just same shit, different place.

PM me if you want to talk.
 
That helps a lot, I think my anus is a goner as well but should have word any day. If it gets rid of these awful abscesses and continual pain then I will suffer most things. It certainly can't get any worse.
Thanks for the offer and I might take you up on it.
 
Hi Jambo,
I was exactly the same. The fear of the stoma. I became catatonic when told I had to have it done. I had spent the better part of 20 years having resection sand telling the surgeon to not wake me if he gave me a stoma.

My bottom was like a watering can, completely wrecked from fistulae and abscesses. I was on permeant antis, and was having setons placed and replaced every couple of months.

I got miss piggy (stoma) almost 4 years ago and she has really improved my life. I no longer have an anus. My bowel ends at my stoma, I no longer need to know where every toilet is, or not go out socially for fear of accidents. I don't like sharing about my stoma to 'outsiders' but have started to now.

I have travelled overseas, had beach holidays, cycling trips, been camping etc etc. my stone has given me back my life. I actually feel mostly normal now.

This forum is a great place to talk, ask questions you wouldn't dream of asking anyone else, and getting advice on clothing, accessories, stoma care, intimacy queries etc.

We have all been where you are, and with the help and kindness of stomates on this forum we have survived and now take living with a stoma in our stride.

A stoma is just replumbing. Not unnatural, just same shit, different place.

PM me if you want to talk.


I love your stoma's name. Miss Piggie. Mine is named Stan. He's an outie; hence, he's a boy. :) And you know what happens when your bowels move. Stan does his boy thing. Lol. His first name was Kenny off "South Park". I didn't watch that show but I knew Kenny died at the end and everyone would say "Who killed Kenny?" I didn't like Kenny. I grew to respect Stan. We work together.
 
Hey guys going in for the chop next week I have an abscess various fistulas and problems with my ileum I'm a mess inside but still here and grateful for it.

What I'd like to know is how do I avoid blockages what do I eat after surgery how soon can I introduce foods and how soon can I be active I miss tinkering in the garage too sick and weak right now I have had a temporary stoma for about 6-7 months and developed my own system how to contain leaks and change the bag but i'm just trying to get my head around what the rest of my life will be like food wise energy levels etc... I found some nice swim trunks and boxers online but unfortunatley they don't ship to Australia.
 
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
 
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 💕
 
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
 
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 💕
 
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! [emoji3]
 
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 😅
 
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..
 
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.
 
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.
 
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.
 
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.
 
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.
 
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)...
 
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.
 
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).
 
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 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.
 
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
 
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!
 
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.
 
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
 
Subscribing via this post; it's two weeks since my proctocolectomy with permanent ileostomy, and I'm finally to the point where I can do things like type a whole paragraph or two without fatigue!

I've had a long and annoying history with Crohn's, and I'm hoping that I at least get remission for some good period of time through this surgery. In the past year I lost 45 lbs, had CMV colitis (hospital to deal with that), two painful abscesses (hospital to deal with the latter one), and had three colonoscopies, and two MRIs. Ugh.

Anyways, I am finally in this 'cool' club, where we proudly poop from the front side! For the past ten years or so, I new it was a pretty good possibility, as one after the other, the biologics stopped working for me (I've been on them all now, in addition to every other medicine under the sun).

Doc said I can take a break from the meds, so for the first time in 15 years, I'm not immunosuppressed!! Also, I'm not spending 3-5 hours a day sitting on a toilet, nor am I jumping out of meetings sprinting to the toilet. So, pretty cool stuff. Much easier to change the bag a couple times a week (though I'm still getting used to all the systems and accessories... and my new little tooty bump—haven't named it yet).

One question: What's so great about two piece systems? One thing I've noticed in trying one after only using one-piece since the hospital is that the flange connector area seems to catch more stool and I can't have my stoma be nice and clean most of the time... is it okay to just let stool sit around the stoma all the time? Seems icky to me!

Also, showering: is it really, actually okay to get the bag all wet in the shower? So far I'm still super careful to avoid it getting more than a few splashes, and I blow dry it after. I really don't want to jinx my no-leaks-so-far record...
 
:dance: Yay!! Welcome welcome, newest member to the front butt cool kids! :) I hope you will find many new positives with this lifechanging surgery--sounds like you are off to a good start. The surgery itself is very hard on your body. It seemed to take forever for me to not be fatigued easily. Don't stress out too much about that, as it will turn around.

I've never used a two-piece system, only one-piece, so I can't be of any help there, but yes it is okay for waste to be sitting around the stoma. I use a water bottle (perineal irrigation bottle that can be found on Amazon.com) to rinse out my one-piece bag each time I empty it when I'm at home. This isn't necessary, but it helps me mentally feel cleaner. And yes! you can get the entire bag wet in the shower, hot bath, and even go swimming! The longer you are in the water, and I am talking hours, you may need to change the bag sooner than every 3-4 days (or whatever your normal interval is), but you can certainly shower without running a risk of water harming the integrity of the seal. I've gone swimming for hours and not needed to do anything different as far as requiring to change the bag sooner, though for some people it may be necessary.

Happy new health to you!!

- Karen and Sideshow Bob
 
I have only used the two piece system and can say that I have no problems swimming or soaking in the hot tub. It may shorten the life span a bit. All I do is change it when changing is needed usually 5 - 6 days, sometimes less. I never do anything else like wash it out between changes, I think doing that is plain gross.
The two piece system makes it easier to air off the bag.
I am loud and proud and I do not let it bother me. I know that I sometimes stink, but its better to let it go than to have it pressurize and leak, even on the plane. Its life changing surgery and it can be inconvenient at times. I do not let it stop me from cutting firewood, I simply take off my pants and wear a leather welding apron when doing such work.
In the house I wear a house coat most of the time. When I am out I wear suspenders and pants that are a few sizes larger to accommodate the bag. Loose fitting clothes are more comfortable and will increase the wear time of the appliance.
 
Thanks for the advice! I’ll try out a shower tomorrow and see how things go. I’m still changing the bag every 3-4 days currently, but I think I’ll be able to get another day or two before changes once I’m more comfortable and settle on a particular brand.

I’ve only tried Hollister so far but I have some Coloplast samples too. Definitely getting my energy back, one day at a time. Regaining my weight after losing 45 lbs before the surgery will be a challenge, too. But I’m definitely looking forward to the rest of this year. Can’t say I felt that way earlier in the year!
 
Hi and welcome..i had a tempory ileostomy for 12 mths. Iv never looked back. It was the best thing ever!!! Been in remission for 4yrs now. No meds in all that time bar painkillers for joint aches but boy thats nothing in compared to what i went through before the temp stoma. Id have another in the blink of an eye if i needed to. If you shower or bathe in a bath then drying the bag with hairdryer on warm setting helps to re-stick the adhesive so making change times longer . Best of luck with the stoma. Hope it gives you your life back. Mine did for sure. By the way i think tooty bump would a great name for it ☺💞
 
I recall the misery I had prior to colostomy surgery. When the doctor mentioned stoma reversal I was hesitant. It was almost with relief when he said that reversal could not be done due to the complexity of the damage after doing scans. I knew from my own body that it was not possible.
Geerlinguy, I had good wear time with both Hollister and Convatec. I found Smith and Nephew Barrier Spray to be both good in terms of cost and durability.
 
Top