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Wanting a bag. Pros and cons?

Past Member
Posted by Past Member, on Tue Dec 09, 2014 9:49 pm

Hi! I was wondering if any of yous can give me some pros and cons to having a colostomy bag.

I was diagnosed, at 20, lactose intolerant last May, and IBS. And I t has completely ruined my life. I used to go out all the time, working, and confident. But since all of this has happened I never leave the house except for appointments, I've been at work probably 3/4 months in the past year, Ive cut most people out of my life from being so self conscious and scared and I'm too scared to go places incase there's no access to a toilet, as sometimes can go 21 times! I also have, what the doctors have no idea what to name it as, but I was rushed into hospital after collapsing with severe pains in my left side just under my rib, which is constantly there but gets very bad when I go to the toilet. The only thing the doctors can think of is that there's a spasm somewhere in my bowel. So they just give me tramadol, codeine and nortriptyline for the pain. Has anyone else ever had similar pains? 

 

I was discharged from the QE hospital as "healthy" a couple months back which is ridiculous. And I've been referred to the RVI to see if anything else can be done, which is not till the end of january.

It's gotten to the point where it's my last resort and the doctors referring me to see a specialist to talk about it. And from what I've read on here, it sounds like the best route to go down!

I was just wondering if anyone is or has been in the same situation and can help me out any with horror stories and the good ones! As readimg about it isn't the same as talking to someone who is going through these things. Anything is welcomed!

 

Thanks in advance!! :)

Reply by Snookis Mum, on Wed Dec 10, 2014 1:48 pm

Hi Lo2644

I have had an ileostomy for 3 years, and it was the best thing I ever did. I had Ulcerative Colitis for twelve years, and also had pain and constant diarrhea. They treated me with every drug under the sun, and nothing worked. Then one day I had explosive diarrhea in the middle of one of our posh department stores, and I went to my gastro-doc and said "enough".

Yes, there will be times when you have problems with the appliance. There will be times when you use very bad language and there will be times when you just put down your head and cry. But compared to having feces running down your leg in the middle of Macy's - that's a no-brainer. I have had very few problems in my 3 years, and now I can ride my bike, go to a movie, go to the gym, almost everything I did before I got ill. 

In my opinion, one of the most important things after surgery is to consult a good WOCN nurse (wound and ostomy care).

Good luck.

 

Sandi

Reply by Zywie, on Wed Dec 10, 2014 9:54 pm

Hi again Lo,   One page you might want to check out here is the Forum Home Page: Ostomy - Related Questions.  There are pros and cons on that page.  If you look through all the forum topics you will find many, many pros and cons on the subject. Also helpful tips and everyday wisdom. 

As I said before, I had to have my colostomy because of anal cancer. If I would of asked more questions before; I would of never had it done. But can\'t change what is.

The surgery is where I will start my experience. I didn\'t feel a thing.  It took 5 or 6 hours. For the first two days after I was fine. Weak, but fine.  I was also on a morphine pump. They told me before the surgery I would be out of the hospital in three days. No big deal.  It would take care of the cancer. After the second day I started throwing up, constantly. Felt horrible. And while I was throwing up I\'d pee myself, which made it all so much more exciting. The pain from the vomiting was horrendous. Seven days later, still vomiting and in awful pain, I was kicked out of the hospital because I was taking too long to heal. They gave me a script for morphine pills (which the pharmacist couldn\'t fill because it\'s a Federal law in the U.S. You\'d think doctors would know this.) And gave me a script for the nausea/vomiting.  I puked every day, at least 3 times a day and wanted to die. I could not eat. This went on for another week.  A home nurse was assigned to me for one month, after she was at my home on a Monday, I called her on Thursday and begged her to tell me what to do about the vomiting. She told me to go to the emergency room or I could die from dehydration. Oh yea, on top of all this vomiting, my output to the bag was like water and the bags kept leaking and I had no one show ME how to change the bag.  So I figured it out as best I could myself. Ruined a lot of my clothing and bedding the first three months. The emergency room doctor gave me some different pills that worked for stopping the vomiting. Thank the gods! I was bedridden from July (surgery month) until just after Christmas. It hurt like hell to do anything. I could not lay any way but on my back all that time. I started being able to eat small meals about this time also. Around January I could finally turn onto one side. A few months later I could turn on my other side. January is when I could actually walk without too much pain. They had to remove my anus and rectum and who knows what else. My butt is not healed. It was painful until about 4 months ago. It bled, hurt and discharged the most disgusting stuff. Also, my GI doctor informed me about 4 months after the surgery that I still had IBS. To me that was the least of my problems. I was very depressed and wished every night I would not wake up the next day. I found this site. I read everything on it I could.  It was about 3 months later I started talking in chat and posting. I made a few very good friends here that helped me a lot. My oncologist informed me that the cancer could come back within the first 3 years. He also gave me the good news that I could still form hemorrhoids. Didn\'t seem fair since I had nothing left back there. But par for the course. Also told me since they had to take out my butt parts that my uterus could fall into the space. Can\'t lift anything over 10 lbs for the rest of my life. My diet is very limited. Even with that I still, to this day, have days that I have constant watery output and am changing the bag a couple times a day. On those days I cuss like a trucker, have to clean my bathroom a few times (if I\'m lucky enough to make it there) and some times end up crying from the frustration.  But those days are not as frequent as the first 8 months. I have managed to keep an appliance on for a week or more with the helpful tips I have viewed on this site. I have a lump on my stomach at the stoma site.  They say it\'s not a hernia, but it sure looks like one.  Definately looks like I have a tumor there. It hurts like hell when I sneeze and cough. I\'ve given up trying to wear certain clothes. I am tired all the time (but that could be from my age or other things on top of this). I was one of the lucky ones and had my surgery done by a robot so I have no scars like some. It\'s been about a year and a half, and I can finally say there are some moments where I can ignore it. I do not like it, never will.  If it saved my life, who\'s to really know. I never asked how long I had if I didn\'t have it as my family all wanted me to have it. I am, as I said 58. Do not want to get married again or have kids nor do I care if I see grandkids come into my life. Point being that if they would of told me I had 5 or 10 more years as things were, I would of opted for that. That was a question I didn\'t think to ask because it all happened within a two week time period and all the information I was getting was overwhelming at the time, plus, as I said, my family was pushing for it. I have learned to tolerate it. 

Most people that have these ostomies didn\'t have a choice. I can see a young person that may still have hopes of having a family or to do things they want to do having this done if they are told it is their only option. Even so, it seems harder to find a life partner once this is done (unless you have already found one). Not just for the fact of having a bag on your belly, but all the medical issues that come with it. My husband was severly disabled for most of our 30 year marriage. It is just as difficult for the partner as it is the one going through it all. Most partners can\'t cope and it really is not that they are a bad person. Some people have said they can\'t do the things they use to.  Some say they still do everything. It\'s a toss-up it seems.  Just as a person can smoke all their life and never have one health problem - where another can not put one cigarette in their mouth and die of cancer. I can\'t dance like I use to, or party, or even walk a mile. But I\'m still alive. Yippee ki yay! With this I wake up every morning and put one foot in front of the other. Try not to think about it if it lets me. And keep myself as occupied as I can. So far, even after all this time, I can not honestly say I am happy I have it. 

That\'s the summarized version of my story and I\'m stickin to it.  Hope you get more replies to consider and read more topics in the forums here.

Reply by Snookis Mum, on Wed Dec 10, 2014 10:24 pm

Oh my God Zywie! What an absoute horror story! I am so glad that things are finally getting a bit better for you, and just hope that your recovery and quality of life get better every day. I am sending you good karma.

Sandi

 

Reply by Zywie, on Wed Dec 10, 2014 11:51 pm

Thanks Sandi.  

I can use all the good karma I can get. :)  I'm dealing with it now.  But it isn't a picnic. I only wrote all that because Lo needs to hear it all so she can make her decision based on everything. I doubt there is one person on here that has had the same exact problems and experiences, but it isn't all wonderful. And you can still end up with the same problems you had before the surgery if not some added bonuses. It's the same with reversals. Some have great success, others wish they'd never done it. 

I really do hope more people add their two cents for her consideration.  Good and bad. 

 

Hugs!  

Reply by mild_mannered_super_hero, on Thu Dec 11, 2014 12:30 am
Lo2644 wrote:

.

I was diagnosed, at 20, lactose intolerant last May, and IBS. 

 

Thanks in advance!! :)


hello, its a long shot but have you tried a glueten free diet ? i have very little confidence in your NHS and i`d hate to see you wind up with a bag simply because you were mis diagnoised. glueten intolerance produces simular symptoms to IBS.  if i were you i`d certianly give it a try for a month or so and see if your symptoms improve. 

my ostomy was performed for colo/rectal cancer, i manage it quite well but didnt at first. in my opinion it takes a few years to get everything right, what you eat, how much you eat, when you eat, which products work, how to get a reliable and repeatable seal, ect.

you can still live a normal, healthy and productive life with an ostomy, i can do most anything i desire except heavy lifting. my ostomy saved my life,while it is sometimes a hinderance.....given the choice i would do it again. good luck and god bless .

Reply by Primeboy, on Thu Dec 11, 2014 12:49 am

Hi Zywie. I am one of those lucky ones whose situation only improved after relatively inconvenient surgeries involving temp ileo, reversal, and (6 years later) permanent ileo. I was back at work just 3 weeks after my first surgery and playing golf only 10 days after my second. Your story convinced me that I have no business complaining about anything any more as it relates to my ostomy. You have suffered more than enough but still remain strong in so many ways. From now on you should know nothing but good health and happiness with all the best karma you can handle. Thanks for sharing.

PB (John)

Reply by elisabeast, on Thu Dec 11, 2014 12:53 pm

I wish I had the guts to walk out of the hospital instead of letting them do surgery...I've met lots of people who are glad they had it...but I'm not one...

Past Member
Reply by Past Member, on Thu Dec 11, 2014 1:08 pm
Snookis Mum wrote:

Hi Lo2644

I have had an ileostomy for 3 years, and it was the best thing I ever did. I had Ulcerative Colitis for twelve years, and also had pain and constant diarrhea. They treated me with every drug under the sun, and nothing worked. Then one day I had explosive diarrhea in the middle of one of our posh department stores, and I went to my gastro-doc and said "enough".

Yes, there will be times when you have problems with the appliance. There will be times when you use very bad language and there will be times when you just put down your head and cry. But compared to having feces running down your leg in the middle of Macy's - that's a no-brainer. I have had very few problems in my 3 years, and now I can ride my bike, go to a movie, go to the gym, almost everything I did before I got ill. 

In my opinion, one of the most important things after surgery is to consult a good WOCN nurse (wound and ostomy care).

Good luck.

 

Sandi

oh my god. im so sorry to hear about your macys experience! but so so glad that youre all good now! thts the doctors have had me on everything and its just to the point where im used to the pains and when they hit hard, they really hit. ive collasped and one time i literally thought i was dying as i couldnt get off the toilet and i was in and out of conscious on the floor from the bad pains and heavy bleeding from the behind. i was rushed into hospital and again, they said i was fine. how on earth tht is fine is beyond me!? but thank you for commenting a good thing as you normally just hear the horror stories. id never heard of what you have and from the sounds of the stuff online, my symptoms are pretty much exactly the same. so ill ask the doctors..

I wish you well in the future! :)

Past Member
Reply by Past Member, on Thu Dec 11, 2014 1:42 pm
Zywie wrote:

Hi again Lo,   One page you might want to check out here is the Forum Home Page: Ostomy - Related Questions.  There are pros and cons on that page.  If you look through all the forum topics you will find many, many pros and cons on the subject. Also helpful tips and everyday wisdom. 

As I said before, I had to have my colostomy because of anal cancer. If I would of asked more questions before; I would of never had it done. But can\'t change what is.

The surgery is where I will start my experience. I didn\'t feel a thing.  It took 5 or 6 hours. For the first two days after I was fine. Weak, but fine.  I was also on a morphine pump. They told me before the surgery I would be out of the hospital in three days. No big deal.  It would take care of the cancer. After the second day I started throwing up, constantly. Felt horrible. And while I was throwing up I\'d pee myself, which made it all so much more exciting. The pain from the vomiting was horrendous. Seven days later, still vomiting and in awful pain, I was kicked out of the hospital because I was taking too long to heal. They gave me a script for morphine pills (which the pharmacist couldn\'t fill because it\'s a Federal law in the U.S. You\'d think doctors would know this.) And gave me a script for the nausea/vomiting.  I puked every day, at least 3 times a day and wanted to die. I could not eat. This went on for another week.  A home nurse was assigned to me for one month, after she was at my home on a Monday, I called her on Thursday and begged her to tell me what to do about the vomiting. She told me to go to the emergency room or I could die from dehydration. Oh yea, on top of all this vomiting, my output to the bag was like water and the bags kept leaking and I had no one show ME how to change the bag.  So I figured it out as best I could myself. Ruined a lot of my clothing and bedding the first three months. The emergency room doctor gave me some different pills that worked for stopping the vomiting. Thank the gods! I was bedridden from July (surgery month) until just after Christmas. It hurt like hell to do anything. I could not lay any way but on my back all that time. I started being able to eat small meals about this time also. Around January I could finally turn onto one side. A few months later I could turn on my other side. January is when I could actually walk without too much pain. They had to remove my anus and rectum and who knows what else. My butt is not healed. It was painful until about 4 months ago. It bled, hurt and discharged the most disgusting stuff. Also, my GI doctor informed me about 4 months after the surgery that I still had IBS. To me that was the least of my problems. I was very depressed and wished every night I would not wake up the next day. I found this site. I read everything on it I could.  It was about 3 months later I started talking in chat and posting. I made a few very good friends here that helped me a lot. My oncologist informed me that the cancer could come back within the first 3 years. He also gave me the good news that I could still form hemorrhoids. Didn\'t seem fair since I had nothing left back there. But par for the course. Also told me since they had to take out my butt parts that my uterus could fall into the space. Can\'t lift anything over 10 lbs for the rest of my life. My diet is very limited. Even with that I still, to this day, have days that I have constant watery output and am changing the bag a couple times a day. On those days I cuss like a trucker, have to clean my bathroom a few times (if I\'m lucky enough to make it there) and some times end up crying from the frustration.  But those days are not as frequent as the first 8 months. I have managed to keep an appliance on for a week or more with the helpful tips I have viewed on this site. I have a lump on my stomach at the stoma site.  They say it\'s not a hernia, but it sure looks like one.  Definately looks like I have a tumor there. It hurts like hell when I sneeze and cough. I\'ve given up trying to wear certain clothes. I am tired all the time (but that could be from my age or other things on top of this). I was one of the lucky ones and had my surgery done by a robot so I have no scars like some. It\'s been about a year and a half, and I can finally say there are some moments where I can ignore it. I do not like it, never will.  If it saved my life, who\'s to really know. I never asked how long I had if I didn\'t have it as my family all wanted me to have it. I am, as I said 58. Do not want to get married again or have kids nor do I care if I see grandkids come into my life. Point being that if they would of told me I had 5 or 10 more years as things were, I would of opted for that. That was a question I didn\'t think to ask because it all happened within a two week time period and all the information I was getting was overwhelming at the time, plus, as I said, my family was pushing for it. I have learned to tolerate it. 

Most people that have these ostomies didn\'t have a choice. I can see a young person that may still have hopes of having a family or to do things they want to do having this done if they are told it is their only option. Even so, it seems harder to find a life partner once this is done (unless you have already found one). Not just for the fact of having a bag on your belly, but all the medical issues that come with it. My husband was severly disabled for most of our 30 year marriage. It is just as difficult for the partner as it is the one going through it all. Most partners can\'t cope and it really is not that they are a bad person. Some people have said they can\'t do the things they use to.  Some say they still do everything. It\'s a toss-up it seems.  Just as a person can smoke all their life and never have one health problem - where another can not put one cigarette in their mouth and die of cancer. I can\'t dance like I use to, or party, or even walk a mile. But I\'m still alive. Yippee ki yay! With this I wake up every morning and put one foot in front of the other. Try not to think about it if it lets me. And keep myself as occupied as I can. So far, even after all this time, I can not honestly say I am happy I have it. 

That\'s the summarized version of my story and I\'m stickin to it.  Hope you get more replies to consider and read more topics in the forums here.

Thanks for telling your story. my heart goes out to you, sending you big hugs!! but its so good to hear things are getting a bit easier for you!

they really sounded like theyve messed you about when youve said they didnt show you how to change and for the fact they couldnt give you the medicaton! that is just not on! :( Sorry to hear about your depression, i hope youre feeling happier and have maybe had counselling? ive been in counselling for a few months now, and it really does help you feel like a weight has been lifted off your shoulders when youre able to just vent out whats on your mind.
So do they not know what the lump is? I cant believe what youve been through and there hasnt been anythng more that they could even do for you, my heart really does go out to you. its just not fair. :(

The only reason ive came to this point is for the fact the doctors have done so much,well supposedly hence why im seeing a new specialist.
ive had the camera up, examinations. scans and been on so many tablets its ridiculous. my life before this, i would go out a couple times a week, now i have been out this year only 2 times as im always on the toilet and anything i eat comes straight away. ive dropped down to just over 7 stone, and have no self confidence anymore. ive got to the point now where im having to be counselled and have depression. dont hardly eat or sleep as im just constantly worried about being bad, and even when not worrying, still just well constant toilet trips. the doctors are still saying its just lactose intolerance and IBS which is ridiculous. ive been rushed into hospital with bleedng from the back passage and being in so much pain all from going to the toilet. And having a bag fitted has just became the last resort. its not that its ideal having one fitted, and what 22 year old wants to go out with this on or any age for that matter!
its for the fact its been nearly 2 years of absolute misery and being house bound. having a bag could atleast, well i hope, give me somewhat of a life back.
Alot of the posts ive been reading have been people suffering from lots of horrible things, which i know is alot worse than what i have, butfor the fact theyve suffered for such a long time and that is something i dont want. Ive read a lot of where it didnt work out and they got it reversed, which is always an "atlest we tried it"
I put my hands up and will happily say id rather stay single and have a life than be single and miserable and ill like i am now. Just have to find someone who is willing to love you no matter what baggage there is. i have a best friend who has serious disease and help out as much s i can and would never let her go because of it. there are definitely people out there who would stick around. also have two best friends, one who has really bad ibs and the other is coeliac so we all stick together.
Im really sorry to hear about your husband and how you feel.. :/ its just not fair.
Again, thank you or posting your story.
Its just really good to hear that after all this nasty nasty stuff youve had to go through, that you are now somewhat managing to cope with it. and again, massive hugs to you and i wish you well for the future!



Past Member
Reply by Past Member, on Thu Dec 11, 2014 1:53 pm
mild_mannered_super_hero wrote:
Lo2644 wrote:

.

I was diagnosed, at 20, lactose intolerant last May, and IBS. 

 

Thanks in advance!! :)


hello, its a long shot but have you tried a glueten free diet ? i have very little confidence in your NHS and i`d hate to see you wind up with a bag simply because you were mis diagnoised. glueten intolerance produces simular symptoms to IBS.  if i were you i`d certianly give it a try for a month or so and see if your symptoms improve. 

my ostomy was performed for colo/rectal cancer, i manage it quite well but didnt at first. in my opinion it takes a few years to get everything right, what you eat, how much you eat, when you eat, which products work, how to get a reliable and repeatable seal, ect.

you can still live a normal, healthy and productive life with an ostomy, i can do most anything i desire except heavy lifting. my ostomy saved my life,while it is sometimes a hinderance.....given the choice i would do it again. good luck and god bless .

 

Hi mild_mannered_super_hero!

Ive been put on different diets and nothing has worked except at first the dairy and egg free diet helped but it got to the point after about 3 months that it was literally just everything. ive found the only things that i can eat, we call them safe foods, is free from pasta and mayo, apples,mcdonalds chicken nuggets and chips and fresh fish. that is literally what i live on these days and if i have to leave the house, i will starve myself and can only drink coke to keep me going.

Yeah we agree with you on the little confidence like. we cant afford to go private so were just hoping the new specialists can help shed some light. one of my best friends is coeliac, its horrible seeing her go through it. ive gone without gluten and its made no difference at all, and its just got the doctors stumped!

sorry to hear about the cancer.. :( are you free from it all now? always feel terrible for complaining about things when there are lots of yous out there going through much worse! we have a family history of bowel cancer, which is the worrying thing incase it turns into that one day..
Are you on a certain kind of diet? it does sound like a hell of a lot of work, but if thats what makes you live and get through your days, its the sacrifice youve got to take. its horrible that life throws these things our way. do you mind me asking, how long you have had your ostomy for?

thank you for commenting! wish you all the ood luck in the future :)

 

Reply by Zywie, on Thu Dec 11, 2014 9:10 pm

Thanks, PB, but we all have the right to be as bitchy as we want to be no matter. So you just go right ahead and complain when the feeling hits you. :)  There's worse than me on this site.  Lorraine comes to mind. She's a real trooper and going through a lot of crap to this day. I don't know how she does it. 

Lo, Thank you too, but I didn't tell my little tale to make anyone feel bad for me. Just wanted you to realize what you're up against. Who knows, maybe you will be one of the people that come through it with bells on your toes. If that is what ends up being your fate. I really do hope they find something else to fix you. You're so young. I took life by the horns when I was younger and I am so happy I did. Those memories put a smile on my face most days.

If you do end up having to do this, at least you know where to come for help.  There's a lot of wonderful people here.

Hugs and good luck!

Reply by Anoniem18, on Thu Dec 11, 2014 10:24 pm
Zywie wrote:

Thanks, PB, but we all have the right to be as bitchy as we want to be no matter. So you just go right ahead and complain when the feeling hits you. :)  There's worse than me on this site.  Lorraine comes to mind. She's a real trooper and going through a lot of crap to this day. I don't know how she does it. 

Lo, Thank you too, but I didn't tell my little tale to make anyone feel bad for me. Just wanted you to realize what you're up against. Who knows, maybe you will be one of the people that come through it with bells on your toes. If that is what ends up being your fate. I really do hope they find something else to fix you. You're so young. I took life by the horns when I was younger and I am so happy I did. Those memories put a smile on my face most days.

If you do end up having to do this, at least you know where to come for help.  There's a lot of wonderful people here.

Hugs and good luck!

Hi Z, just thought I tell you no bitchyness allowed, or else I will have to come south and straighten you out.

Just be your sweet usual self, and we all will get along fine.

Love you,

Anoniem18 (Ed)

Reply by Anoniem18, on Thu Dec 11, 2014 11:23 pm

And then there is my story, the sun would shine ... out ... if I had one. December 2011 going up the stairs I would feel out of breath for a minute. Eventually decided to go to see my dr. but the receptionist claimed I was no longer her patient, since I hadn\'t seen her since 2003. Another story. I had had a heart attack in 1999 spent five days in hospital, quit smoking (40/day non filtered), and lucky me no effects from the heart attack. Thus in 2011/12 they assumed it was heart problems, unbelievable number of test later, and now Feb/March 2012 they wondered why my hemoglobin count was so low, but no blood found in the urine or stool, so they decided to do an endoscopy and colonoscopy, asked them to do the endoscopy first (should they use the same tool).

The result was four massess of colon cancer, guess if I do something I do it well. April after 8 hrs in the OR I woke up in the recovery room as the sole remaining patient, but my sweetheart was waiting for me (my daughter).

The major problem was sitting down, but one of my nurses took several IV bags filled them 3/4 with water put them in a personal possession bag so I could sit down without hurting my a..

I had a young nurse show me how to change the bag which is not an easy thing to do while lying in bed. Next one I went into the bathroom and did it before the nurse came to change it.

After five days I left the hospital. I went through sixe months of chemo and radiation, and kept complaining about them giving me placebo\'s and told them I would stop coming unless they turn on the machine, reason being I had absolutely no side effects. Even complained about having to pay for a hair cut since they had told me I would loose my hair; I didn\'t.

I applied for the Canadian disability tax credit and received approval, but only because I think it is one\'s duty to reduce one\'s tax payable.

I usually change the flange every 4 - 7 days, and will place the used one in a baggy with water and will re-use, While the government gives me $600 to buy supplies, I hate to spent money on bodily functions.

Must be my Dutch heritage, I\'m not cheap just frugal. :-)

Just about everyone knows I have a bag and I don\'t let it define me, I joke about - I can go to the bathroom standing up. or while talking to you. And I will have the washroom all to myself, if not immediately shortly thereafter.

I kept working and am still working, but I wish they had told me not to lift anything heavy, now I a a stoma on top of \"half a grapefruit\".

In the end I don\'t think it has changed my attitude towards life, except that now I have more empathy for others who go through such a hard time. (Even for Zywie)

My problems are experiences when things didn\'t quite go as expected, when the bag is in the bottom of your pants, can be awkward. Just pick it all up, and pretend nothing happened walk to the car put plastic bag on seat, drive home take shower, then take off clothes.

Best one yet recently, after driving for quite a while I forgot to check and realized bag was rather full, I opened the top slightly to release some air, drove to IKEA walked into the washroom and just after I entered the stall and found the bag on the floor. And of course with my luck the stool was for once solid, used toilet paper to clean everything, walked out, plastic bag as above.

I still lift heavy stuff, I made my own hernia belt, (should post picture of version 2).

My only complaint?

Everyone else with an ileostomy is complaining about trying to gain weight I weighed up to 230 lbs at one point in my life was about 220 when I went for the operation, was down to 185 lbs, but guess what trying (somewhat) to keep the weight to 210lbs.

But the funniest part is they tell me not to eat the healthy foods - whole wheat salads, etc, eat white bread. but being diabetic I should eat the healthy foods.

So my attitude ignore it all - don\'t worry be happy.

And to top it all off I ended up having a former girl friend move in with me, who is trying to run my life, but not quite suceeding. And she doesn\'t want to hear about stoma related stuff.

And doesn\'t like me walking without clothes from my bedroom to the washroom. I guess we all have our cross\'s to bear.

My doctor, who is still my doctor, and chastised me for giving her receptionist a hard time, assured me that without the operation I would not have been here for long.

My kids were mad at me when I told them I could always go back to Holland because they believe in euthanasia. They thought I was serious.

My radiation oncologist apologized told me it was nothing personal but he doesn\'t want to see me anymore. My chemo oncologist told me she was reducing the visit to once every six months after changing the six months to four months.

Whether the world is better off with me still around, may be debateable but regardless I intedn to stick around for a long time.

And the longest stay in hospital? In 2013 I spent seven days in hospital waiting for removal of a gall stone, since it is an elective procedure it was being postponed day after day until my surgeon (same one) came back at 10:00 PM (after working all day) and we went into the or at 10:30 and was back in my room at 11:00 and discharged the next morning.  Gall bladder was done as an outpatient - day surgery back home at 2:00 PM.

So Lo, here is a story that is quite opposite to Julie\'s (Zywie).

Good luck.

Ed

Reply by Zywie, on Thu Dec 11, 2014 11:23 pm
Anoniem18 wrote:

Hi Z, just thought I tell you no bitchyness allowed, or else I will have to come south and straighten you out.

 


Ummm that's a threat ?   If bitchyness gets you to come for a visit I'd have to turn it up a few notches. wink

Love you too. 

Reply by mild_mannered_super_hero, on Fri Dec 12, 2014 5:26 pm
Lo2644 wrote:
 :
 

 



 

Hi mild_mannered_super_hero!

 

sorry to hear about the cancer.. :( are you free from it all now?

 

always feel terrible for complaining about things when there are lots of yous out there going through much worse! we have a family history of bowel cancer, which is the worrying thing incase it turns into that one day..

 


Are you on a certain kind of diet? it does sound like a hell of a lot of work, but if thats what makes you live and get through your days, its the sacrifice youve got to take. its horrible that life throws these things our way.

 

do you mind me asking, how long you have had your ostomy for?

thank you for commenting! wish you all the ood luck in the future :)

 

yes, i am cacer free....while it`s never cured, its in "remission" as they say.

 

complain all you want, thats what this web site is for...we will always listen and try to help.

 

i am currently on the adkins diet, both to help me keep from gaining any weight and it helps my daily function. its high in protien and low in fiber......thats about perfect for my situation.

 

 

i got my ostomy in 1999, thats the year i was diag. with the cancer.  

Reply by Mary Ann, on Mon Dec 15, 2014 1:49 pm

I think it all depends on what the underlying condition is

I have seen bags for cancer, IBS, etc

Mine was for diverticular abcess, with stricture, had been having problems for months and they kept going down the wrong path, finally my Dr sent me to the ER to get a CT scan that would have taken weeks to get as an outpatient, I was in pretty bad shape at that point, heavily infected,  had to buy a shower chair, could hardly walk (Abcess had worked its way into my hip, I thought it was arthritis), had lost 30 pounds. The day after I went to the ER I had surgery and woke up with a bag, it went much better better after that but I was really debilitated. They kept me in the hospital for 16 days and wanted to discharge me to a nursing home instead of home, even though I have lots of help at home.  When I got out my bag would not stay put for more than a few hours, would leak all over the bed at night (my husband was a gem and would change the bed at 2 am for me), finally got the bag to stick a few months later and developed a horrible painful/itchy rash around the stoma from the only adhesive that would work.  Second operation was supposed to be a takedown, however once again a new stricture had developed and they converted it to an ileostomy, did another surgery 5 months later. Then finally about 5 weeks ago I had a successful takedown.

 

Would I have rejected the colostomy if I had known all the problems that I would have?  NO

One of my aunts died from a perforated intestines due to diverticulitis with stricture, there were a lot of days I was down, but the alternative to the bag was worse, it gets better

Reply by LadyHope, on Tue Dec 16, 2014 10:45 pm

Hi Everyone, Thought I would join in the conversation about the pros and cons regarding an ostomy and pouch.  I never wanted this operation and if I had any other choice besides dying, I would have given it a try.  Making this decision was very difficult as I knew it would be a permanent one.  I went from healthy to sick in a matter of months.  And, I thought my being sick was caused by lots of stress and food poisoning.  What did I know?  Anyway, my GI doc called my husband and asked him why I was waiting to have surgery as I was dying.   I was taking numerous meds that did not work for me hoping to get better and get on with living.  I still remember the pain, blood and going to the bathroom all night long.  The memories haunt me at times.  My husband was really scared that I would die in my sleep.  I agreed to have surgery.  After surgery, my health began to improve.  It did not happen overnight but I slowly gained weight and began to feel well.  I went back to work 7 weeks post op.  Caring for the stoma and maintaining the pouch is very different but doable.  As each day goes by, I become more comfortable with the routine.   What helped me the most was connecting with others who have an ostomy.  All of  you were my inspiration and strength and I appreciate all the posts and information available.  I don't  know how I would have gotten through the struggles without the support of this group.  The posts are informative and helpful. And, I look forward to group meetings and conferences.  We are part of a wonderful family.  Thank you everyone for your knowledge, posts and support.  Happy Holidays!  LH 

Reply by violet-hummingbird, on Wed Dec 17, 2014 9:24 am

Hi Lo,

i am sorry to read about the troubles you are having. These are some ideas from a primary care nurse practitioner and ex-ostomist . I had a reversal op after a year of colostomy following diverticulitis a few years ago. I have ibs too which still flares up at times of stress and anxiety. it was doing so when I was wearing a stoma appliance too..it meant more bag changes and still had to visit the loo to do so. 

Don't underestimate the psychological aspects of committing yourself to a stoma..some people find it devastating (me included) whilst others get along very positively with the change. There is much more to the situation than it being a remedy for pain and frequent bowel trips

Personally, I'd explore every option before having surgery, it's not just the op but also the risks that you will read about in here. Infection , hernias etc. 

Have you explored help for anxiety and IBS..that might help. Have you been screened for coeliac disease. Have you been referred to an allergy specialist for blood test RAST to determine food allergy? Have you taken meds to improve diarrhoea?

i might even go to see an alternative health practitioner..eg naturopath / herbalist if mainstream nhs isn't helping and they have ruled out inflammatory bowel disorders. 

Kind regards

 

 

Reply by Cuppatears, on Wed Dec 31, 2014 2:37 am

I've only had a colostomy for 4 1/2 months, but my surgeon said (after two surgeries to remove rectal mass, unsucessful), surgeon said "it''s cancer", I heard "I now pronounce you dead). Two months after diagnosis, I was doing chemo and radiation, never having 'accepted' that I would have an APR, removal of rectum and anus.  two months of recovery during which I felt fine, wonderful in fact. And then the reality, major surgery, non reversible, permanent. I rebelled, I DO NOT WANT TO HAVE SURGERY.  But you'll eventually die said the doctors, my family, my friends finally convinced me.  Right until the moment they knocked me out, I couldn't accept what was happening.  I came out of surgery ok, came home and fell into the deepest depression.  I'd already started seeing a therapist because I knew I would need help, now 4 1/2  months later, I've kind of gotten used to it.  Not accepted, just gotten used to it.  I suppose I would feel differently if I'd had major issues for months, years as some have.  I thought I had hemorrhoids, and treated myself until I saw blood in toilet, that started this whole crazy year of doctors, chemo, radiation, surgeries, second opinion--and finally colostomy.

Explore every avenue, until you are comfortable with the the decision you come to, I wish you the best, keep coming back here, it helped me so much!

Reply by LadyHope, on Wed Dec 31, 2014 11:49 am

Hi Cuppatears,  Thank you very much for your post.  I could relate to every word.  It took me some time before I could really embrace the idea that I was never going back to the "old ways."  Like you, I fought to the bitter end...until the docs said it was surgery or die.  I could not believe my ears....only months before I was fine, no issues.  What makes me sad at times is that the docs in the early days seemed to dismiss that I was physically declining due to the UC and bleeding.  It was the lovely nurses, PAs and my husband who took charge and became my voice in those dark days of pain and blood.  Anyway, I made it this far, almost two years.  I take each day one day at a time.  I am thankful for the second chance.  I recently saw my nephew perform at his grade school Christimas concert and I am happy that I was able to be there and see the performance.  He was thrilled that I was there too as I waved from my seat and clapped extra long at the end of the show.  I often think, maybe one day the docs and scientists will come up with an alternative to ostomy surgery.  They send people on the moon, why not another solution.  Until that time, I continue living.  I am so grateful for this wonderful group as they have helped me through their experience, strength and hope.  Happy New Year to all of you!  LH

Reply by joegreen, on Wed Dec 31, 2014 12:04 pm

   LadyHope... I was shocked at how fast the onset of your UC was and then so terrible that it required surgery so soon. My case was similar, except it lasted a year before I had the surgery (Ileostomy at 18 due to UC). I sometimes wonder about the cause(s) of UC, if it's environmental, etc. I was given Lyncomycin and Dalacin C as a child and there was discussion years later that one of these medications was potentially the cause.

   Anyway.... you sure have a great attitude. You should be a motivational speaker. If not, then maybe a writer (your messages are so well done).

Reply by LadyHope, on Wed Dec 31, 2014 4:39 pm

Thank you Joegreen for the message.  I appreciate it.  Like you, I wonder if the UC was due to an environmental situation.  I actually believe that I had e coli from eating a mishandled hamburger.  My immune system kicked in to overdrive but did not stop trying to eliminate a germ that was no longer in my system.  The end result was a destroyed colon that needed to be removed.  I still eat hamburgers although well done today.  Have a happy New Year!  LH

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