This Stoma Subforum

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Over the next few days I'm going to put the ostomy threads into this subforum but if I miss some just send them to me in a link and I'll put them up. Thanks

Jeff
 
I hate you, I love you

My stoma wouldn't be so bad if it would just sit there and be quiet and not empty without my permission. It's not like the stoma itself is so ugly, well it can be but who's poop hole is adorable anyway right? :rosette1:
 
Lesliegg...come on over and start a hello thread on the stoma subforum. We're all nutters but we are helpful!

I dream of making Stan behave. Literally. I slap him.

Misty
 
I am often confused about how to write on something when I come on the site. If I just want to sort of "blog" something, like write about a subject, dealing with my stoma and people in my life, where do I start that type of thing? Here? Please reply. thanks
 
If it is about your stoma then I would start a new thread in the Stoma sub forum. If it is about a topic that fits in another forum then start a new thread there.

For example, if you have something to vent about that doesn't really have anything to do with your stoma then pop it in the Vent Away sub forum. If it's about a medication then go to the Treatment forum and so on.

HTH,
Dusty. xxx
 
Just graduating from 'newbie' and would like some feedback from anyone with an ileostomy and has experience of adhesions. I've had loads of gut removed and also have i.b.s as well as Crohns Disease. Didn't know that was possible but it's official, written on my file. I have a very short colon and am pretty well housebound as the frequency is :-eat then poop x 6 or7 times( emptiable bag)and then am so exhausted, sleep. I graze mostly but am very limited to what I can eat. My weight is steady around 9st( I'm 5ft 7ins)so that's not a problem.
Some feedback from someone who recognises these symptoms would be really welcome. Docs have said adhesions prevent further surgery. I get blockages from time to time as apparently theres a kink in the colon which is cused by scar tissue.
sorry to soud like a whinger but am just so glad to have found you all!
 
hi paddy,
i'm pleased i found this forum too. i don't have ileostomy but have got a feeding tube through abdomen into stomach. Gastrostomy is what its called. i'm so pleased someone else is housebound. i get too fatigued to do anything much at all. life's pretty lonely too. people ask why i don't have a bag, but really, my mum has one and i know the issues concerning them. its not all plain sailing with them and i'd rather stick with what i know, that D every day and night too. but i'm used to it.

i do understand the issues you have as life just isn't easy. i know loads on this forum manage to hold down a full time job. how they do it i have no idea. but i think i'm definitely in the same league as you, so you are not alone with that lifestyle.

Best Wishes
Diane
 
This Stoma subforum

Hi Diane, good to hear from you. You're fed through a tube? Doesn't that get boring? Having said that, the food I live on is boring too so I guess it's just a case of getting the nutrients into you...
How long have you had Crohns? You say your Mum has it too...I'd heard that it could be genetically passed on. That's tough for you both! I've got 2 daughters and no signs yet but I didn't start showing any symptoms until my late 30s.
Being housebound isn't too bad for me. The terror of going out and having a leak outweighs the monotony of being at home. I do go out most days (before I eat) to walk our 2 dogs and pick up any groceries from the local shop.About an hour max. The dogs are wonderful company and sense when I'm having a bad day. Our little mutt, Buddy is very intelligent and is full of energy. He misses his walk if I'm not well enough to go out but doesn't fuss. We also have a beautiful Whippet called Tess. We rescued her from someone whose pitbull was torturing her. She can be very nervous around strangers but when we got Buddy 3 years ago, he was 9 weeks old, she took over as his Mum and they adore each other. She's much more confident now and very protective of Buddy. He's far tougher than her but whippets aren't kown for their brainpower!
I also make cards. I love doing it and it's so nice to send a card which someone appreciates. I sell a few too through a local shop.
Welcome to the forum. Tell me a bit about your day. It'd be nice to chat sometimes...
very best wishes
Paddy
 
Hi Paddy,

I do have a tube that goes through the abdomen and into the stomach, it gets very sore as it has crohns in the stoma site. yes, its very boring, but i do have nibbles here and there. i have had crohns for 36 years and am living a very disappointed life, i rarely get out. would love to go out, but like you worry that i need to know where the loo is and that there is no queue for it. my mum had ulcerative colitis and has an ileostomy, she does not have nausea and fatigue, nor pain now, well, apart from her stoma, that does cause her some issues.

i have four cats for company, i think its great to have pets as company, but i have had to put a hospital stay out of my mind as it isn't possible to get people to care for them, so i'm probably not in the best of health. never mind.
 
This Stoma subforum

Good to hear from you Diane. Gosh you have been through the wars. Your Mum too. Do you live near to each other? My husband is a great support when I get an attack of the blues; do you have a family? I find the condition completely rules my life as I'm sure yours must do too. Do you have anything that you enjoy doing at home?
I must admit that my bed is very tempting on a bad day but I try to fight that because I'll have trouble sleeping overnight! I'm usually up about 5 or 6 times which can make me very tired the next day but I take sleeping pills so it's not too hard to get back to sleep.
I do hope you have a good support group that will pop in and visit and that you have good medical support. You sound like you need lots of help.:rosette2:
talk again soon
Paddy
 
actually its hard to get out when i'm on my liquid feed, and i too am up every night on and off loo, then tired during the day. Mum lives 20 miles away, and i don't have family. i did have two neices in the road, mum nearby and a sister in town too. but all that has changed. so i'm finding it extremely hard. i also try to resist bed but fall asleep on the sofa, cos i'm just so exhausted just surviving. crohns certainly rules my life, i'm a bit ashamed of it and feel somewhat debased as i cannot believe i've had to live a very minimal existence. but at least i'm not born to africa, to starve, or rummage on landfill sites for a living. i am greatful that this is a first world country where we don't pay too much, if anything, for medications.
 
The Stoma subforum

Hi again! You do seem to be a bit low today. Did you have a bad night? Because I don't have the liquid feed I don't know what you're going through but am here if you feel like a chat. I take the dogs out between 12pm to 2pm( depending on the way I'm feeling and the weather). Of course they don't get the full 2 hours, just 20 minutes round a park and 10 minutes for any bits I need from the shop but I have my Pc on almost constantly when I'm cardmaking. I like to listen to the music from the '60s/70s on Sky radio. It helps me concentrate!
I don't want to impose myself but understand depression and if I was in your shoes I think I'd have a lot of bad days, so if you feel the need for a chat, feel free.
Hope you've got decent weather. That always helps!
Paddy :rosette1:
 
Hi everyone. I just thought I'd put in my 2 cents because I can relate to your struggles and woes. I spent years house bounding myself because of embarrassment of leaking fistulas and such. I also use to be very tired. I am now on a few anti-depressants (and others meds). Really they have made a world of difference for me. The one also helps me with some pain issues as well. I have a colostomy now and since I got it (15 or so years) I haven't had any signs of fistula problems at all. My kids call me a "shut-in" because I don't go out either. I do walk my dog and do some shopping, pretty much daily. I spend most of my time on the computer. Whether I am outside or in, I don't think I am as depressed as I use to be. I just feel so comfortable at home so that's where I want to be. I do get down some days. It makes me feel bad when I here about my siblings and all the activities and traveling they get to do but I know what it's like to not feel well and so I thank my lucky stars for the days that I am not in major pain. I love life and feel stronger because of all my past experiences with suffering and pain. I hope you feel better soon. Sorry if I am just babbling.
 
This Stoma subforum

I'm glad to find some others in similar situations and wonder wherther we can help each other out by corresponding more regularly. Being housebound can bring on depression and loneliness and blow everything up... if you can have a moan to someone who knows how you feel, it might help us all. I'm happy to provide my email address to Spooki 1 and leslie egg if you want some personal interaction, even a 3 way thread... we all seem to be in the same boat!
I've just come back from a weekend away to London to stay with my girls( 37 and 40!) and had the most horrendous panic attacks both ways. I have to fast because I have a 'frequency' problem and nearly passed out a couple of times at Gatwick.Getting back from gorgeous weather in London to torrential rain in Northern Ireland didn't help either. Am not even dressed yet as I feel very weak...I'm just a wimp, go onsomeone, say it!
Looking forward to getting some replies fro Spooky and Leslie...
Paddy ( female by the way!):ghug:
 
hi, Paddy,

sorry i haven't replied to the pm you sent me, but i'm a bit stuck as to how, lol. i know certain things on a computer and forums, but am unsure of other things, so apologies for not writing sooner.

i agree with you and Leslie, and am grateful you both understand the dilemmas of being 'shut in'. i have lived this lifestyle for so long and i do find i become depressed also. i just can't help it. i think it might partly be the chronic fatigue that goes with it and the joint issues. i just don't have the opportunities that others do.

Paddy i'm pleased you have made the 'epic' journey to London. well done. i know about the panic attacks. i have been there. i also 'starve' myself if i need to go out, and hope the bile doesn't misbehave and chuck straight through. its wearing having to go out when ill, especially on a long journey. i'm not a holiday person either because of health. i would love to travel though. however, on a brighter note, i expect your daughters were delighted to see you, and that although tiring, it was a successful trip and totally worthwhile. i also get to the stage of passing out when out and about using energy that my body hasn't go to spare and find i have to sit down. the hubbub of a crowded area is also a problem when it comes to trying to find the loo.

i do some things at home to occupy myself. like leslie, i spend a lot of time on the computer, but i also read, like art, and if well enough a bit of clay. i talk with relatives on facebook too. i have my cats for company, fortunately they don't need walking! lol. so i'm not obligated to get up fast in the mornings to get them walked.

Leslie, its nice that you are less depressed. i also take anti depressants and go through phases of complete blackness, wondering what the hell i'm thinking of living this stupid life for when this disease takes everything from you. and then there are the days when i'm feeling a bit brighter and am okay at home, like you both. at least i too feel comfortable indoors most the time. before i found this forum, i couldn't have any contact with others that live exactly the same lifestyle as me and can relate in a way that my relatives and friends don't understand. so i'm very grateful to those that set up this forum and i regret not finding it sooner. its so nice to have the moral support and understanding from those in my shoes. what a relief. thanks all. i like the idea of keeping us each in touch but i must learn how to reply to pm thinks. i'm sure i did it once, but where i put the message myself is full of your test to me paddy. not sure how to reply so i shall have to do the trial and error bit. lol.

Best wishes,

Diane
 
Hi Diane what is your email address? mine is [email protected]. If you want to write to me direct, for instance if you're having a bad day, then I'd be happy to communicate direct. I'm happy for Leslie to have the address too as we do seem to be in the same boat!!!
 
Stoma Changes

Hi guys,
I do not know the reason why but my stoma has changed in the last few months. For years it was pretty level with my skin and my bowel movements were much looser. I have been having to change my wafers everyday and I know I should see a Stoma nurse but I'd like to ask if anyone knows a better Wafer for stomas that are more protruding. I am now using Hollister #8774-Center Point Lock-Skin Barrier with Floating Flange and tape champ protector. :rosette1:
 
Are you using barrier rings too? You need to see the stoma nurse as your stoma may be prolapsing. They can fix it, dont worry! Its not an unusual thing. But you need to be seen to have it sorted.

Please keep us updated!
:heart:
 
All my cheerful messages have risen up and slapped me in the face today! Very down, sore and achey. Medication seems useless and terrified to eat as my stoma site is so sore( emptyable bag for ileostomy) and now diagnosed with short bowel syndrome. Even the sunshine over the last 2 days didn't help...By the way I have to change my bag daily as it gets so noisy and wrinkly after 24 hours. Is that normal?
 
hi Paddy, great to hear from you again. my mum put the phone down on me fast as her stoma bag, ileostomy, has done nothing but leak all weak. her stoma site is usually blistered, skin off in patches and bleeds too, tis the stomach acids, she often used to sit there and cry but there was nothing we children could do for her. so its still giving her the same old issues even after 39 years of one. hers gets crinkley too. i knew you suffered short bowel syndrome by your previous posts. its obvious cos like me you eat something and the lot just shoots straight through, its such a nuisance.

i just got back from my gastro bloke, got to have chest xray as i've done nothing but cough since humira and a colonoscopy as my transverse colon and terminal ileum are agonies. not had anything much at all in my colon since my twenties, but now, pushing 50 i've got issues all over again.

best wishes, hope it settles down soon
 
Replying to a few people here

Terrinut, thank you for your reply. I am sorry I answered so late. I must have missed your answer somewhere along the line and didn't see it until paddy put his problem up. I try not to use barrier rings because I have had problems with the tender skin under the wafer, when I do anything but put the regular wafer on it. I haven't seen anyone yet. I quit my doctor and stupidly missed my appointment with the new doctor. Sometimes I annoy myself!
In answer to the couple other posts...about wrinkly bag noise. I am very conscience of that noise.Right now I wear a Hollister 8812 bag. It is covered with a light sort of material which helps cut down on the crinkly noise and is also somewhat easier on sweating. I am sorry you are not your Cheerful old self right now Paddy. I hope it passes quickly. Not the poo...I am sure that will pass when ever it stinkin wants. Iwant to write more but just looked clockwise and realize I've got to get dressed to pick up my grandson from school. Bye for now!
 
Leslie, why dont you start a new thread on here, and see if you dont get lots more responses? If you dont know how, I'll be happy to do it for you.
:hug:
 
Thank you

Thank you David for all your help. I feel allready better only to know that there are other people as well with stoma's!!!!!Although I knew there are other people as well, but i could not find any group for support. Thank you again.:kiss:
 
Hi

Hi Spooky, I am new on the site and got a lot of insight through Paddy and your conversations. I live in South Africa and got a stoma last Year, May month. With the operation, there was complications and therfore have a very difficult stoma. My colon was removed 16 years ago, because of cancer. Although I was thankful that I beated the cancer, I had to adabt to a new lifestyle. Now the stoma. I realy feel for your mum. In the beginning it was very difficult to find a stoma that stick! Because of my tummy that is so damaged with the operations. I then changed to the Hollister 8513. And that solved the problem. When I change my stoma, I first clean it. Then I put with cottonwool Gentian Violet all around the stoma. Then I spray Savilon - barrier film also around the stoma on the skin. That protects the skin. When it is dry, I put Eakin Paste (Ref 839010) on the Eakin Cohesive (Ref 839002). The paste help to protect the pooh to go on my skin. Then I attached it as closely as possible around the stoma on the skin. I then put inside the ring (Eakin Cohesive) a little bit of stoma powder to further protect my skin. Then I put on the bag(8513). I try to eat 5 small meals a day. I drink at least 1 to 2 glasses of rehidration a day. I drink daily 2 times a day 2 gastron tablets. It helps that the stuff is not so loose. In the beginning I took 2 tabs 3 times a day. I also take 2 times a day 1 Altosec. This helps a little bit for the acid. Also in the beginning I took it 3 times a day. I also try to at least once every second week to sit outside in the sun without the bag. It took my 3 months, but my skin is now healed. My problem now is that I get this horrible burning pain on the left side of my stoma when there is bowl movement! Now I drink 3 panado's every day for that!!!!!!!! Please sent all my love to your mother and update me how she is doing now.






Spooky1 said:
hi Paddy, great to hear from you again. my mum put the phone down on me fast as her stoma bag, ileostomy, has done nothing but leak all weak. her stoma site is usually blistered, skin off in patches and bleeds too, tis the stomach acids, she often used to sit there and cry but there was nothing we children could do for her. so its still giving her the same old issues even after 39 years of one. hers gets crinkley too. i knew you suffered short bowel syndrome by your previous posts. its obvious cos like me you eat something and the lot just shoots straight through, its such a nuisance.

i just got back from my gastro bloke, got to have chest xray as i've done nothing but cough since humira and a colonoscopy as my transverse colon and terminal ileum are agonies. not had anything much at all in my colon since my twenties, but now, pushing 50 i've got issues all over again.

best wishes, hope it settles down soon
Click to expand...
 
Just to say hello

Hi Paddy, I have written a loooooooong letter to introduce myself. Just to be cut off in the middle of my letter. I live on a farm in Paarl. It is about 100km from Cape Town, South Africa. The signal on the farm is sometimes very low. So sometimes when I am on internet, I get cut off, because of no signal!:stinks: But although it is a hazzle, I love the farm live. I live with my 3 dogs, Bulterier, French Poodle and baby Pitbull and two cats. I had coloncancer 16 years ago and my colon was removed. Then last year May month I got a total blockage and got a iliostomy. hope my spelling is correct, my homelanguage is Afrikaans, but I do understand English. Anyway the op was a emergency one and there was complications. I was 2 months in hospital. Now it is me and this stoma. Live without a colon was a change. Now this is another change. As from December I lived in daily pain and after trying a lot of things, it improved now. Although I do drink everyday 3 pain tabs. How are you these days? Did your health improve?::)





Paddy Holmes said:
Just graduating from 'newbie' and would like some feedback from anyone with an ileostomy and has experience of adhesions. I've had loads of gut removed and also have i.b.s as well as Crohns Disease. Didn't know that was possible but it's official, written on my file. I have a very short colon and am pretty well housebound as the frequency is :-eat then poop x 6 or7 times( emptiable bag)and then am so exhausted, sleep. I graze mostly but am very limited to what I can eat. My weight is steady around 9st( I'm 5ft 7ins)so that's not a problem.
Some feedback from someone who recognises these symptoms would be really welcome. Docs have said adhesions prevent further surgery. I get blockages from time to time as apparently theres a kink in the colon which is cused by scar tissue.
sorry to soud like a whinger but am just so glad to have found you all!
Click to expand...
 
:welcome: Hannetjie!!!

Glad to have you on board. You have been through the ringer. But it sounds like you've beaten everything that has come your way, and hopefully, you will continue to do so!
 
Hi there, Hannetjie,

welcome to crohns forum. sounds like you're really going through it at the moment, but its great to hear you survived cancer. hope all settles down soon
 
Hi Hannetjie, so happy to hear from you. I hope all is well and that you are getting good care...I think every region has different types of support. I'm not very lucky however I have a wonderful husband who is very understanding and he helps me more than I can say. Do you have a visiting stoma nurse that you can call on? I feel that is so important as so often we become frightened to go out. I know I do and have to be really carefull if I know I have to go outfor any length of time.
I look forward to hearing from you again, you must be very brave! xxx
 
Thank you

Paddy Holmes said:
Hi Hannetjie, so happy to hear from you. I hope all is well and that you are getting good care...I think every region has different types of support. I'm not very lucky however I have a wonderful husband who is very understanding and he helps me more than I can say. Do you have a visiting stoma nurse that you can call on? I feel that is so important as so often we become frightened to go out. I know I do and have to be really carefull if I know I have to go outfor any length of time.
I look forward to hearing from you again, you must be very brave! xxx
Click to expand...
Hi, thank you so much for talking to me. I apologise for the late reply. But we do not have a strong signal on the farm. So there are many days that I cannot go on internet! And I am still struggling to use the forum!:yrolleyes:I do not have a stoma sister that come and visit me at home. I dont think in South Africa they do house visits! But I do go to Cape Town when I need her. That is a very expensive visit and the stoma products as well. Luckly my medical aid pays most of it. But it is a ongoing struckle with my med aid, because everytime they first reject the claim and after contacting them, then they pay. Otherwise I must go to the provinsial hospital. That is a state hospital. There I get some of my products (bag, rings) for free. Some of the products they do not have. Their is also a stoma sister, which I like very much. Patty why can't you leave your home? Or what happened that you are so afraid? Did you also had mishaps? Like the bag came loose etc? Do you also have pain and what is you diet? Sorry for all the ?, but every doctor and every stoma sister gives me different advise!:sign0085: I feel like an allien. It seems those who do have stoma's dont talk about it. I could not find one support group in my area. It is like if they are ashamed of it. Is it the same in your region? I must also say, my friend is very supportive. He puts on the bag etc, because my stoma is very suncken in. It is very difficult to put on the bag correctly. Patty do you also feel sometimes depressed? Okay enough questions, I think the answers will keep you bussy for days:lol2:
 
Terriernut said:
:welcome: Hannetjie!!!

Glad to have you on board. You have been through the ringer. But it sounds like you've beaten everything that has come your way, and hopefully, you will continue to do so!
Click to expand...
Thanks. The problem I and everybody else have is that WE HAVE NO OTHER CHOICE! But this stoma really is something else. When I had cancer. I got the op and chemo for a year. And that was emotionaly a very difficult time. But this time I need to deal with pain. How do one deal with pain? The pain decides where and what I can do for the day. Planning is nearly impossible. Because I never know how I am gonna feel the next day/moment. But I hope, I pray that the doc can find the problem with my next visit on Friday. :lol2:
 
Spooky1 said:
Hi there, Hannetjie,

welcome to crohns forum. sounds like you're really going through it at the moment, but its great to hear you survived cancer. hope all settles down soon
Click to expand...
Hi, I really hope your mother is better. I beat the cancer, and I will always be gratefull for the Lord that He saved my life. It was a touch and go time! When I got it, my only prayer was that I life until my son is done with school. Now he is 26 years old! So yes I am very grateful. It is only the daily pain that I have, that realy is very difficult to accept. Hopefully the doc I am going to see on Friday do find the cause. If only I know why I get these horrible pains, then I can deal with it. Even if they cant fix it. It is the not knowing that frustrating and depressing.:eek:
 
I just wanted to say a word about the genetics plus my stoma . although my brother and i both have Crohn's , there were 5 siblings , none of his children or grandchildrern have it , i have 7 grandchildren and none of them have it there ages range from 21 to 7, and a great grandson whose 1 , neither can my brother or i link it back to either grandparents , so i wouldnt worry too much ,
My stoma is HUGE .. its prolapsed for a 2nd time .. :) its 60 cms in circumference and its sits on a massive hernia .. I called the first one MR Blooby , then this one is much more like MIss PIggy if you KNow what I mean .. lol but they were both done as emergency surgery , so saved my life , im waiting for a reversal , you can adjust too anything if you want to , yes its tiring and annoying , but i can think of worse , dont despair , im retired now and life isnt all bad ,
 
I know how you feel,I hardly ever leave my house either because my colostomy leaks so much.It only takes one time of having a major leak inside a store to make you never want to leave your house.I have had Crohn's for over 20 years which led to rectal cancer,chemo,radiation,2 colostomy surgeries and now on Feb.7th a proctocolectomy and ilesostomy.I am tired,I really hope this surgery works because I am running out of options.I am living with my daughter and her family until I feel better,so I have my Grandkids to keep me company,and they are by far the best medicine in the world.
 
There seem to be so many of us in our own worlds due to terrible colonic problems. Thanks to whoever started this site so that we can talk to others who know what we're talking about. I was hospitalised just after Christmas with a blockage and I don't think even the nursing staff know what we're going through. Perhaps if someone knows a member of the nursing profession, they could encourage them to read a few of the messages her and learn what it's like.
I wish you release from pain and anxiety and a person whom you trust to help you on dark days. We're all here for each other xxx:heart:
 
Hope you're recovering well, Paddy. You're right. its a diabolical disease, though i'm as ever, hoping this year will be better. I don't know why i start each year off as optimistic as there are no cures yet, lol.

Best wishes to all those suffering, and of course to the person who set up this site!!!
 
i always think THIS year will be better, but it never is. It seems to get worse every year, but like you spooky I am ever optimistic that each year WILL be better. :)
 
yes, we deserve it for sheer stamina and perserverence with this. We are worthy of a cure. sending prayers for the whole crohns site and for the ones that set it up so that we are not so lonely.
 

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