What they dont tell you

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gmm

gmm

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what they dont tell you

just wondering if any folks out there have any advice on what the docs/surgeons dont tell you about ending up with a bag after surgery?, the annoyances sleeping face down , leaking, mucus, having the backside stitched up , lingering pains etc, i have already made up my mind on what to do, but it would be great to hear the "downs" or cons from other people
thanks, george.
 
gmm

The doctors sell you one rosy picture, they don't wear bags so they don't know much about it...

But seriously... the biggest problems I faced (now 9 weeks post op) was with leaks etc - messed about with Hollister for 2 months and almost went insane. Now using Convatec - and wow - what a difference!!

It takes a while for output to thicken - people say 3 months - I am well on the way, and it seems it does happen.

I think they main issue is psychological - the feeling of being "different" than others. But other than that (and I don't minimize the significance of that) its much easier than the pressure of not knowing when and where you would next need a toilet.

good luck
 
heya welsh bird , hopefull,
seems that if i admit to having surgery im gonna be left with a bag, was hoping it was gonna be a simple cut out the bad bit and join job, at the same site as a hemicolectomy in 2003, but between the consultant and surgeon they are determined to leave me with a bag, its not the stigma of it just that i know myself im going to ignore its being there and the hassles involved with it, im too much of a realist to think im going to be a different happy person with it , quite the opposite in fact, lol.im being left with the choice of permanent or temp, as the temp is to rest the surgery to be left with a short bowel op, none of which i want or think i need,, just the small bowel area where it joins the large bowel taken out
thanks for replying
george.
 
Hi George -

The biggest downside to having the bag that I have found is that it sucks when it's really hot because it gets all sweaty under the bag.

I do also find it a drag that I can't wear everything I want to wear or used to be able to wear - had to buy a lot of new clothes, but for a fashionista like me, I enjoyed the excuse to shop!

Good luck with the surgery. Hope it makes you feel tons better.

- Amy
 
thanks amesluise
im only hoping the surgery can end up with a resection at the problem area but not holding out much hope, as im a dedicated scruff clothing wont be a prob if i was that worried hehe, i did tell the consultant and surgeon what would happen if i was left with a bag and was told that theres a last biologic left to try think its tsybari?, but the warnings kinda put me off it, as i posted in the surgery section i really need to find a diy kit and do the job myself lol, as im am getting fed up now of it clamping up and not letting food through for a week or so every 3-5 weeks
 
Hi the worst thing for me is the gas, I wake up every morning and its like its about to explode and also not being able to wear what I want! I also seem to look at everyone to see if I can see if they have one ( sad I know) but I can never tell! Good luck x
 
hi gmm,
everyones different but i am 7 weeks post op, i have never had a leak, i'm using the bags i started with (coloplast)...also my output was normal thickness just about a week after surgery.

the main things that annoys me are:
* the sticky section of the bag can be itchy sometimes- the same way plasters can get itchy...but with things like barrier sprays, this can be dealt with.
* i have to change my bag after a shower becuase the outside of the bag isn't water proof and would take a while to dry.
* i'm eating soooo much at the moment so i am getting up a couple of times in the night to empty my bag (but i empty as soon as it gets 1/4 full).

don't worry about having a bag, it was nothing like i was expecting, i am so happy with it, i'm very protective of it now, i see it as a friend rather than an enemy lol.

good luck and take care. feel free to ask anything!
hannah
 
George, the worst thing for me is taking care of the skin around the stoma. You really have to watch that! As I had a parastomal hernia, it ripped my skin all the time. That is PAINFUL.

Sleeping with the bag is ok, but I dont sleep on my tummy, Cindy does though! I am very happy with my bag, and I do thank my lucky stars I have it or I'd be dead!
 
thanks for the replies folks,
im waiting on an appointment with the consultant again to see why i cant get away with just getting the small/large bowel join area operated on only, as im not giving up to losing 3/4 of good large bowel because of this one area alone,, or the other op which will leave me with a short bowel,, my mind was made up a long time ago about being left with a bag and it hasnt changed one bit lol,, as my temperament for something new and which will cause great change in my habits and life would not be welcome, especially as all thats needed is a more " simple " operation to remove one 10" piece on its own
thanks again, george.
 
Have you ever had any past Crohns activity in the currently Crohn's-free portion of your colon? If so, they'd be quite confident the disease would just re-appear there again post-resection. My rectum has been spared the last couple of times I've flared, and some people without rectal involvemnt are offered a connection of the small bowel to the rectum after a colectomy. But I don't think I'm eligible because my rectum HAS been diseased in the past, even if it's not now. In fact, that's where my disease began. So they'd assume the disease would just return there post-op.

If it's never been diseased though, I don't know what their reasons would be for refusing to do a resection.
 
i have had in the past but not to the extent that it caused me any hassle that i know of, just the odd abcsess now and again, i was told that they would take the small bowel and attach it to the area in the large bowel about 10" or so above the rectum, leaving me short bowel and probably not much better off than i am now on the pred, its only the area where the hemicolectomy was thats causing all the trouble, hence why i wont give up on a good working bowel lol
thanks, george
 
For me the worst part is the hair that grows under the flange that get's contstantly ripped out, I shave around it, I never get it all.
 
If I were completely healthy before I got my ilesotomy I would probabaly think of the bag as a hassle to take care of. I was extremely ill before surgery and probably would have died if I hadn't got my ileostomy. A couple of weeks before my surgery, I was still upset and wanting to cancel it. I was in a store and had to hurry to the bathroom. I ended up with poo on my jeans in the bathroom and was mortified. I thought to myself, here I am shiting myself and I think I have a better quality of life without a bag? I knew right then it was time to get the bag. Now I feel great and I'm able to do more now than I have in years. If I were to chose what bothers me most about the bag, I would say the fear of others smelling my poo in the bathroom at work. Sometimes ileostomy poo can smell worse than regular poo. Being a girl that works with mostly all guys, it can be embarrassing.
 
kris i can really understand the position you were in,if i was the same id be half thinking of getting a bag but so far im lucky in that i get the "5 min warning" and seem to be able to judge when i can get away from the toilet for a few hours in peace,due to eating at certain times and making an effort not to put myself in a position that im going to get caught out ,this is why i was asking about all the things the docs /surgeons wont tell you when your feeling at your worst and in hosp again throwing up and not being able to eat for a week or so,the burst bags not being able to sleep normally what its like to be sewn up or if its left open, the pains and recovery, no one has ever mentioned any of these or more that im unaware of when i was in hosp , twice now for emergency surgery, thats the main reason i walked out , without knowing the full outcome and counting myself lucky that i did get out of there in one piece
vonfunk guess im lucky in that area like a snooker ball down there lol
 
re sweating under the plastic when it's hot: can you use a little antiperspirant there? I get serious sweats like night sweats, only I get them in the daytime. It's terrible under my boobs, so I now put antiperspirant on my skin there after I shower. Working so far.
 
I personaly have never had a bag burst at night. I sleep great at night. I'm a side sleeper, but sometimes lay on my stomach. I don't get up in the middle of the night and empty either. Before surgery I was running to the toilet every hour or more. I didn't have my butt sewn shut, so I can't help you there. The surgery was hard and very painful afterwards. Probably the worst week of my life. I healed quickly though. I was back to work in 8 weeks. If I had a desk job, it would have been back in 5 weeks. My job is very strenuous at times and I needed to be completly healed. I had one leak during the day and it was my fault. I would do the surgery over again in a second, because of the quality of life it has given me. You will know when it's your time to have surgery. Just be careful and don't wait too long. You don't want to get to the point where I was. Get second and third opinions if you have to. Just know that an ileostomy isn't as life changing as you think. For the worst anyway.
 
gmm, being sewn shut feels no different from normal. i thought after surgery i'd have pain there and i didn't at all, now and again during the 1st week it would feel tight if i was stretching to reach something etc.
don't take all the negatives to be the norm. i have never had a leak or burst bag.
and i agree with the post above, it's not as life changing as you think.
 
thanks again for the replies folks its great to hear what actually goes on from the people thats actually been through it all, and will speak their minds of what can happen, as i said before none of this is explained to you in the 5 mins or so its discussed in hosp
 
This is depressing reading this thread..I hope I don't have to end up with a bag :( Or being it permanent anyway...For those who currently have one..is that permanent?? .I could NEVER live that way..I'd tell the doc to just euthanize me lol..I know that's not funny..but I guess I have a crude, strange sense of humor..but in all seriousness..
 
Terri, many of us have ended up with a bag as it was a matter of life or death...it is never a choice! i would be dead without mine and yes it's permanent, if you ask me having a little bag stuck to your stomach is a small price to pay for your health.
 
Personally, I think someone coming into the stoma subforum and making that comment is a bit offensive!
 
You don't have to think of it as permanent. Life is not permanent either :)

Terriernut, I don't think anyone meant to offend, its just the fear and wrong perception people have of it...
 
I understand it can be easy to speak those words Terri when you haven't had to face the prospect.

I don't have IBD but many times, early in my life, I have said similar words about other diseases or conditions people find themselves in. For example...I would rather be dead than end up a quadriplegic...that sort of thing. At the time you truly believe what you speak but that changes when you are in fact faced with life changing decisions or worse still, you have no choice in that decision but rather it is thrust upon you.

I found myself in a situation many years ago that mean't I perhaps needed to have procedures done that I vowed I never would. I didn't end up needing them but at the time I was in so much pain that I would have consented to anything, literally. It changed my outlook significantly, I realised then that unless I was in that persons place I didn't know how I would react, but most likely vastly different to how I thought I would.

Life is precious, very precious and it is amazing and courageous what people will do to preserve it. My son was faced with the prospect of a temporary stoma this year. I hated the thought of him perhaps needing one but I knew why it may have been necessary and would consent to him having one in a heart beat if it mean't he remained with me in this world. Perhaps selfishness on my part but hey, I will gladly call myself selfish under these circumstances...:)

Dusty. :heart:
 
Terri, I also must disagree. If you find this thread depressing, poke around the other threads in the stoma subforum and you will find tons of encouraging posts from us ostomates that are happy and living lives that are a hundred times better than they were before our surgeries.

And sometimes it IS a choice. I could have refused my ostomy and demanded to try other meds. No thanks. Surgery is a treatment option, not a last resort, in my opinion.

Life with a bag is GREAT. I know not everyone feels that way, but most of that have them certainly do. I wish for anyone facing this life-changing (for the better) surgery that they have the insight and courage to embrace it and be at peace with it.

- Amy
 
Terriernut said:
Personally, I think someone coming into the stoma subforum and making that comment is a bit offensive!
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Then be offended! I have a right to voice my opinion. I'm just sayin I couldnt live that way. If my crohn's ever got that bad i'd tell them to get screwed. I dont mind surgery and resection if it had to happen but not bag..no way.
 
You may change your mind Terri, when and if the time comes for you. It's amazing what people will live with, just to LIVE.
 
Hi everyone,

I think George asked an excellent question, so let's make sure that this thread stays on topic and is helpful to George and other members who at some point may find themselves in a similar situation.

I would also encourage everyone to make sure they are following the Forum Rules at all times.

Play nice everyone :).
 
You're entitled to voice your opinion but others are entitled to view it as offensive when its done with a lack of tact and sensitivity. Just sayin'.

George, when do you see the doctor next? I'm interested to know why they're refusing a resection if the only diseased area is in the middle somewhere. I'm sure they have their reasons but many docs disagree - I learned recently that second opinions can be very valuable, even if all they do is confirm what the first one told you. It can at least reassure you that the option you're being offered is the right one, even if it's not the one you want. Hope you can at least get some clarification on that matter soon :).

Getting info from people here is a great idea. No one can tell you what it will be like unless they've experienced it first hand - that's true of EVERYTHING in life. And even then the same thing can affect each individual differently. I find patients way more reassuring than doctors lol. They know their shit! (quite literally here!).
 
ameslouise said:
Life with a bag is GREAT. I know not everyone feels that way, but most of that have them certainly do. I wish for anyone facing this life-changing (for the better) surgery that they have the insight and courage to embrace it and be at peace with it.

- Amy
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Gotta agree with this. It took me a while after my stoma ops, but I was at my lowest ebb before surgery and now my life is flying! :) :)

Terri, You are indeed 100% entitled to your opinion. I do feel very sorry that your view on the bag is so negative. But I would have felt very similar myself around 7-8 years ago before I acutally knew people and spoke to them on forums about how they lived with an ileostomy. I realised people could live full lives and it didn't hinder them.

Out of my friend group only a few know, and at work only my HR dept. are aware I have one. I don't particularly care if they do know, however I don't want people to think of me as the ill guy, I want them to think of me for who I am and what I do. The stoma bag is not noticeable and I don't let it hold me back. It's helped me live again, unlike the full blown uncontrollable Ulcerative Colitis flare that let me to it. I wish you well on your jouney with IBD whichever way it takes you. :hug:


George, there are things they don't tell you, it seems all have been covered by the wonderful posts from people here already. And as I said after my Ops it took me a while to get over a few hurdles, but for many...and luckily for me....it has been a second lease of life. All the best chap. I hope whichever surgical route you go down the outcome gives you back your life :)
 
thanks for all the replies folks looks like i started a wee stirring to a hornets nest lol, waiting for the next appointment in the post to see the consultant again, but im pretty sure he's got it in mind with the surgeon to leave me with a bag, seems as though its more cost effective to my way of thinking, as for the area thats affecting me the worst its the small/large bowel joining area that keeps closing up on me , there is a small area at the tail end that doesnt bother me at all, but they seem to be set on taking the 3/4 of good bowel out because of this thats why im still on steroids and doing fine, untill the rogue area decides to clamp shut again, my views on ending up with a bag/stoma for myself are not really that good seems to be more cons than pros, and as ive stated before i just dont have the temperament to adapt or change my habits over an op that i cant accept i need,im certain that its just a "simple" case of a resection and id be back to what id call near normallity, i sometimes think that the dr's and surgeons are basing their decisions on their past experiences and not on mine which i feel every time i end up not being able to eat because of the one area that affects me, ill get there in the end lol,
once again thanks, george
 
dressing with a bag

I am just 4 weeks post op but how in the world are you able to wear outdoor clothes without the bag filling with air and poking out? I'm still mainly around the house, my wound is still oozing a lot.

I got that water that you told me about. When did you actually start feeling better? How long were you off work?
 
Downsides? Stitches in the backside sucked for about the first two weeks for me. Once the stitches were gone I basically forgot that anything had changed back there. Not being able to easily tuck in a dress shirt without the bag being obvious can be a nuisance. I do miss being able to sleep on my stomach, but not really a big deal. I'd say that usually the only times I ever leak are during sleep. (although my body seems to have figured out that I need to wake up more often at night to use the facilities) My quality of life with the ostomy is 100 times better than it was without it. Good luck with whatever you have done!
 
Hi All, I had a colectomy and an ileostomy in May. My little stoma (strawberry) saved my life and I love him. He was a little bit noisy at first, which made us laugh, but now he is no trouble at all. I have no more worries about finding a loo, or worry about horrible accidents. No-one need know he is there and I can wear and eat what I like. Yes, the op was painful but it is so worth it now. My life is fab, my hubby doesn't care, the bag can be hidden and disguised. I was scared and repulsed by the idea at first, but now I know what I have gained I don't give it a second thought. So, please think about and research it before hand, just in case. Then you will be prepared. Hopefully you won't need this op but if you do it is nowhere near as bad as you fear.

Kaz xxx :)
 
littlefreebird said:
gmm, being sewn shut feels no different from normal. i thought after surgery i'd have pain there and i didn't at all, now and again during the 1st week it would feel tight if i was stretching to reach something etc.
don't take all the negatives to be the norm. i have never had a leak or burst bag.
and i agree with the post above, it's not as life changing as you think.
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Pretty much this ^^

I've never had a bag leak or burst and having a bag has made my life so much better.

I did however have a fair bit of pain whilst initially healing but that was purely because they found out I was allergic to Morphine so I went through the whole thing with Paracetamol.

But it was all worth it as I'm still here and my life is now so much better than I can ever remember it being.
 
thanks owen kaz rob, its great to hear that you have such a good outlook on things post op, and the other folks too,seems the gut is clamping up every 2-3 weeks now, so its a battle to keep eating at the mo but when i can i really make up for it lol, things have taken a strange turn the last few days as in im eating like a horse only going to the toilet about twice a day and breaking wind like a trumpet fanfare, giggling like a schoolboy wonder how long it will last?
thanks again, george.
 
hahah yep, basically been on it from the start cept for near a year on humira it really has been a great standby for me currently on 35 mg cant get lower than 30 before the smallbowel/large area decides to close up, if i was allergic to it id be at a total loss
 
You've been on prednisone for a year?!! Wow, that has to suck...lol Prednisone is such a horrible drug!
 
more than 9 years actually lol, its the only thing that really works and as far as i know so far no major side effects thats known, guess im lucky in that respect as other folks really have probs with it, which is a real shame as it can be such a quick acting solution for getting people out of a living hell sometimes
 
gmm said:
more than 9 years actually lol, its the only thing that really works and as far as i know so far no major side effects thats known, guess im lucky in that respect as other folks really have probs with it, which is a real shame as it can be such a quick acting solution for getting people out of a living hell sometimes
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You might want to have a DEXA scan done. Im on steroids on and off (mostly on) for about 10 years and I made the mistake of not taking calcium supplements and not exercising - I was warned about having osteopenia but thought it wasnt a big deal and ignored it. Fast forward a few years later and I ended up fracturing 7 vertebre in my back. Changed my life forever.

Just wanted to warn you - bone loss is a silent disease and you may not notice it until its too late. Please get a DEXA scan to determine your bone density, and take those calcium pills. Its worth it.
 
i am taking calcichew daily and residorinate 35 mg once a week as a precaution, had a scan about 4 plus year ago, would be great to get off pred alltogether but i have no options at the mo
 
Everyone's situation is different

For me, I am just about on the brink. I cant stand to live like this anymore but I cant stand the thought of wearing a bag either. I have been sooo sick for so long I a, just fed up.

I suffer from severe sleep apnea also. I am always tired and run down and miserable and bloated. My marriage is shot, my wife is fed up with me. I have had sex twice in the last year.

I am stuck with two incurable diseases that have plagued me for most of my miserable cursed 42 years of hell. I have lived life in a daze due to the sleep apnea.

I sleep on a god damned because my wife cant stand the noise from the CPAP machine which althoughb put an end to my thundering snores hasnt done $hit for my energy level.

I am very good looking and in good shape, a lot of women flirt with me but I cant do anything cause 90% of my waking hours I have to poop - pretty much my story much of my life. I am in so much pain and discomfort. I spend hours a day squeezing out tiny pools of mucus that feel like boulders in my colon.

I just started smoking again after having quit for seven years. It is literally the only thing that makes me feel good. It is so important for me to have something that makes me feel good. Jerking off is only so rewarding you know.

I work out everyday at the gym. I am considring doing steroids, I am like what the f*ck. If I could just look in the mirror and be proud of my appearance before I die.

I wonder to myself...Is it more selfish of me to want to die or to want to live?

I have a wonderful 7 yo daughter but what good do I do for her? I am either sitting on the can or falling asleep when I am not. Maybe everyone is better off without me - especially myself.

Yes there are people worse off than me. But all I know is what I feel. I feel mad, angry, fed up, disgusted, F*CK this life I have been dealt.

You mean to tell me wearing a $hitbag is going to turn it all around for me?
 
Do you think any of us set out with this disease wanting a bag? I'm sure it was the biggest fear for all of us who have one. I know it was for me. I thought I would die before I ever consented to getting a bag. I was on the brink of death before getting mine and I chose to live. Now, I feel great, I have tons of energy, my sex life is AWESOME, and I don't spend all day thinking of my disease anymore. Those of us who have one aren't trying to push the idea on anyone. We are being completely honest with what it has done for each one of us. You can chose to believe us or not.
 
barelyalive : I'm sorry to hear you are having such a difficult time! I can't say for sure having a bag will turn it all around, but I can certainly say that it turned it all around for me. My life prior to the bag revolved around using the bathroom or making plans to use the bathroom. I basically don't think about any of that now. Given the choice to go back to the way I was or to continue on as I am now, I would never go back.
 
I'm with Kris and Owen on this one. I NEVER wanted a bag prior to having one. I just dealt with my constant pain and bathroom trips and thought I was doing alright. Since I got my bag, I now realize how awful I felt...and how that affected everyone around me. My fiance says he got his 'girl' back. Our sex life is fantastic, I don't go to the bathroom a gazillion times a day, I can play with my stepkids and not feel like crap. Don't get me wrong, it was hard to adjust to; the surgery and recovery sucked...but now, almost 2 years later, I feel great! And the bag is just...well...a part of who I am. It's remarkably freeing to poop wherever you want to....lol
 
ameslouise said:
Terri, I also must disagree. If you find this thread depressing, poke around the other threads in the stoma subforum and you will find tons of encouraging posts from us ostomates that are happy and living lives that are a hundred times better than they were before our surgeries.

And sometimes it IS a choice. I could have refused my ostomy and demanded to try other meds. No thanks. Surgery is a treatment option, not a last resort, in my opinion.

Life with a bag is GREAT. I know not everyone feels that way, but most of that have them certainly do. I wish for anyone facing this life-changing (for the better) surgery that they have the insight and courage to embrace it and be at peace with it.

- Amy
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This forum is depressing??? Personally I love the POSITIVE attitude this forum has-you guys rock! I have been told it is a future eventuality for me to have my small intestine removed. You guys motivate me and give me hope-even with it's challenges, you guys are thriving and living life!

I have had colon cancer and I totally agree 100% that when faced with a life or death choice, it is amazing what we are capable of doing in order to live. And no one really understands that until you're faced with it.

Best wishes to you George, so glad you're getting answers-I hope this helps. Even though I can't speak from experience on this subject I want to offer my encouragement and best wishes on your journey!
 
barelyalive said:
You mean to tell me wearing a $hitbag is going to turn it all around for me?
Click to expand...

Yes, it can. If it turns out ok for you you wouldn't be spending most of your waking life on the toilet. Ipso facto, from what you say in your post life will be better for you.

I'd be thinking the same as you ten years back. But after I was diagnosed I met with many people who had CD and UC and many had stomas through a support site very much like this. I saw them partying, doing extreme sports and living normal lives, doing exactly what they wanted to do. I'm lucky I met these people when I did, because when my time came to have one I wasn't the least bit scared of getting "the bag". And now, in my life, I'm living better than ever.
 
barelyalive said:
For me, I am just about on the brink. I cant stand to live like this anymore but I cant stand the thought of wearing a bag either. I have been sooo sick for so long I a, just fed up....
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First of all, I think you need to quit those BS workout supplements. Pink magic? Jack3D? Those type of products are loaded with stimulants and I would NOT be surprised if they are messing with your GI tract, especially since you take them in tandem with your other medications. Give that a rest - even if its just for a little while and see how you feel.

Second, what kind of medications have you tried..? I mean, your other supplements arent really going to do much. Have you been on a biologic medicine? How about surgery? What about steroids? (No, not the steroids you mentioned, im talking about things like prednisone).

Whats your doctor say about the status of your colon? Have you had a colonoscopy recently? Whats your deal?
 
I was going to say the same as kekemonster - you don't seem to be on very strong meds (Lialda and Canasa being the weakest of those on the market). If you haven't gone on to stronger meds yet there is a lot you can try. Maybe if you tell us a little more about your disease history (meds, location, severity etc), people might be able to offer more sound advice :).

I'm so sorry you're having such a rough time, I hope you can find away to get some relief soon.
 
In addition, I dont think you should be taken the tums at the same time as prilosec. The same goes for that gaviscon. You are on 3 different medicines for acid. That can cause GI issues in itself. I would stick with just the prilosec..That type of medicine needs acid in your stomach to work and tums can interfere with that. (Should be taken an hour before meals)

Also, you are on two different medicines that contain mesalamine. I've never heard of someone taking two seperate oral medications that contain mesalamine. Did your doctor tell you to take both? Regardless, mesalamine is pretty weak and if thats all you've tried so far, well, there are certainly many options for you to try and a colostomy bag certainly would NOT be the next step if you haven't tried those options yet.

Other options you can consider (let us know what you've tried and not tried)
Immunomodulators (mp-6, imuran)
biologic drugs (humira, remicade, cimzia)
surgery (to remove a portion of the bowel, not necessarily to create a colostomy)

I think we need more info to help you better.
 
yep theres still a lot of meds to take or try that could turn things right round for you yet ,
 
I agree with Ian Keke and gmm-there's alot of medications out there for you to try, and combinations of these meds-before surgery.

I personally question a doctor that has you on two different oral mesalamine pills and allows you to suffer like this without giving you different meds.
 
Terri, just like the previous poster said you may change your mind when/if the time comes.
Life with a stoma is not what anyone had in mind, but I know several people who wish they had gotten theirs sooner.
Yeah...you have a right to speak your mind...probably should try to keep it to yourself sometimes though! was it really necessary?
 
Thank you to everyone!

:rosette1: Although I have not had surgery yet, and my head is spinning wondering what product is going to work the best, and since I'm not educated on what things to use, 2 piece, the wafer thing, pastes, adhesives, etc-------I'm gonna keep reading and I'm writing down EVERYTHING!!! Thanks to Terriernut, Kris, Ameslouise, Littlefreebird for your wonderful outlooks. Obviously, I'm not alone, and will greatly appreciate your experiences and helpful hints. The general consensus is, ileostomies are life savers---and I am soooo ready not to have abdominal and back pain and fatigue and malnutrition. We won't mention racing to the bathroom, trying not to poo my pants while at work and while playing with my boys at the park! I have a lot of this thing licked--I don't believe I'll look like a freak--because the people who care about you don't care! Sending good thoughts to all of you and my sincere thanks---I'll be talking to you soon!!!
:pika: Snap
 
Snap, you'll be fine. I LOVE my bag. I actually even think it's better than being a normal person! I especially love that when someone farts in the living room, no one blames me anymore. I never have to fart anymore! It's great. And that's just the beginning. I still feel sexy too. It's not changed anyone's mind about me either.

Good luck and let us know how it goes!
 
Welcome Snap! Be sure to pop back often and start your own thread when you are getting ready for your surgery so we can all keep up with your progress!

- Amy
 
If you have a bag AND use marijuana as part of your treatment. Always, always empty your bag before partaking in the medical marijuana. Trying to do so after medicating is terrifying.
 
I woke up from emergency surgery with a bag on my stomach. I had no idea what a colostomy was or how it worked. I went into the e.r. with a perforated colon. This was before the crohns started..... it took me a few week to adjust to it. And as the crohns got worse I have been glad I have it. Life is much simpler when you can control bathroom visits etc. No more hemmoroids or sore bum etc.... sure there are minor inconveniences but its worth it. I have had mine for 9 years. And no one knows except the people I chose to tell.
 
Snap said:
:rosette1: Although I have not had surgery yet, and my head is spinning wondering what product is going to work the best, and since I'm not educated on what things to use, 2 piece, the wafer thing, pastes, adhesives, etc-------I'm gonna keep reading and I'm writing down EVERYTHING!!! Thanks to Terriernut, Kris, Ameslouise, Littlefreebird for your wonderful outlooks. Obviously, I'm not alone, and will greatly appreciate your experiences and helpful hints. The general consensus is, ileostomies are life savers---and I am soooo ready not to have abdominal and back pain and fatigue and malnutrition. We won't mention racing to the bathroom, trying not to poo my pants while at work and while playing with my boys at the park! I have a lot of this thing licked--I don't believe I'll look like a freak--because the people who care about you don't care! Sending good thoughts to all of you and my sincere thanks---I'll be talking to you soon!!!
:pika: Snap
Click to expand...


Hi Snap.

I've had my stoma (lil Miss Gussie) for over 3 months now. It's NOT bad. Sometimes I think it is a bit more convenient than the tradition way of eliminating.:wink: As far as the bags, you will figure it out. Keep asking questions and definitely call all the vendors to get the free trial packages. That helped me a lot! I wish I called them all just before my discharge.

You have joined an AWEsome group here.
 
Terri, go back and re-read your own post. You are speaking to people who do have osomys right now. Please try to read your words as if you had one yourself, and hopefully you will be able to see why what you said is offensive, and not helpful to the original poster.
 
I'm 19 and I was afraid of having an ileostomy before my surgery because I thought it would drastically change my life or something but I was in soo much pain and I couldn't eat so I really didn't have a choice. My bag isn't permanent, I only have to have it for 6-12 months and then I can get it reversed but it is not as bad as I thought it would be. I change it every 4-5 days (only take 5-10 mins), I empty it 3-5 times a day (takes about 5 minutes each empty so no time at all) and I am not in pain anymore and I can actually eat now. I'm happy I got this done, I was like Terri before and I though I would never have to get the bag and how my life would suck so much if I had one but it is great to have one because it makes me feel lot better :)
 
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well i fanally gave in, wasnt able to eat and keep anything down from two days before new year untill about the 17th jan, got an appointment really quickly all thanks to the consultants secretary and the crohns nurse, looks like surgery is due as i have to taper down on the pred and see what happens if i get worse "come right in" lol, seems like they want to do an anastimosis rectal.? means i keep some of the large bowel and not end up with a stoma, as ive no intention of dealing with one, so here goes, lets see what happens, thanks for all the replies folks and keep feeling good

george
 
Good luck George! Hope the surgery is a success and you are feeling better and get a normal life back!

Please keep us posted on your progress!!

- Amy
 
thanks hoprful and amesslouise,
will do it'll prob take a few weeks for the rogue area to close up again due to ledd pred but it is inevitable as thats all i have left to take, so it just a waiting game again but im having seriuos second thoughts about just being left with such a short piece of large bowel and having the 3/4 of good middle bit thrown away lol
thanks again, george.
 
Terri, there is NOTHING wrong with having an ileostomy if it means you have your life back. Are you afraid of the unknown? afraid of it smelling? there are tons of solutions for that. Nobody knows you have an ostomy unless you choose to tell them. You are still the same person with a bag, the only thing different is just that your plumbing is rearranged. That's all AND YOU HAVE YOUR LIFE BACK!!!

I've had mine since I was 17 years old. It saved my life as I was extremely ill due to an inflammed colon that had several fistulas and abscesses. I do NOT regret it one bit. I have my life back and I DO NOT miss living in the bathroom 24/7, dealing with severe abdominal pain, bleeding, missing school, being tired all the time, etc.

Now I am able to live my life and give back to those who helped me via the local ostomy support chapter. Maybe you need to visit a local CCFA chapter or even a local ostomy chapter, Terri, to see what we ostomates are all about to help you understand that there is NOTHING disgusting about wearing an appliance that has helped save our lives. Heck,why not wear a wafer and a bag attached to your abdomen for a day filled with some water to see what it's like to be in our shoes and then maybe you'd understand it's a life saver and a God send. Medical students that have come to our meetings do that for the entire session--we put a wafer & bag on them so they are in our shoes for a few hours. Would you be up for the challenge??

Knowledge is power. The more you know, the easier it is to accept your situation. I can still do everything before I had my ostomy. :)
 
George, good luck! You will be in my thoughts! :thumright:

I just want to say, I do not have a stoma. I have had a fear of having one since my late teens, before I ever knew what IBS, IBD, UC or Crohn's were. My grandmother had one due to a ruptured bowel from diverticulitis.

But since being diagnosed with Crohn's in June of 2011, I have learned a lot. I have learned a lot about aspect of Crohn's that I hope to never experience. But if I do, I am more prepared due to this forum and it's members. I thank the universe every day for our members and their willingness to share their experiences!

You guys Rock! :cool:
 
Good luck George.
I just had my stoma put in.
I was surprised at how long it took my bowel to wake up after surgery - I had no idea it took so long! I hadn't eaten for weeks prior - so it was a bit out of practice.
The only other thing that has surprised me is the recovery time. I tend to think every takes 5-7 days. Not 6-8 weeks!!

I hope your surgery goes well and it brings you the relief you need.
 
Thanks Nyx. I think I'm in a reasonably amount of denial about the recovery time. I'm not used to living life at half pace - so I'm resisting it!!
I have also nit even begun to contemplate how long it will take for my poor ulcerated rectum to heal. It was a mess.
I have to remember all of this whilst I grizzle about relaxing and resting on the couch - asking others to do chores for me.
 
I know it's tough! We all want to get out there and do what we used to do right away and not feel like a burden to anyone else. But this was a major surgery...our bodies need the time to adjust (they move your guts all over the damn place and they need to settle back into place again). I suppose some people take a shorter amount of time than others (depending on how sick they were before surgery, whether it was open or lap surgery, and if there were any complications), but I'd say at least 2 months of lazing around is required :)
 
Yup. I'm trying to stick to that plan.
I'm just not used to it. But I'm getting there.
I've never been so well rested before!!
 
lol, relax and enjoy the lazy life for a while , you deserve it after what you've been through
 
Major surgery in your abdomen is gonna take a long time to recover. When I got my stoma it started working right away and I didn't have any problems. But like you I had to be a couch potato for weeks. Don't push yourself to do to much. Just relax and imagine all the tiny cells in your tummy getting stronger as each day passes.@@
 

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