One of my managers who was only 26 had Crohn's Disease, this sounds a lot like that, its a lot to put up with, so I can understand that it gets you down. Would your quality of life be better if you had the operation?
I guess it might be Slade, but with having COPD I am tired and stoma bags are inclined to leak. Anyone on board here who has a stoma . . . Please tell me it is not so bad. Guess my own I fear that I cannot manage to change the bed daily xx Ros xx
You don't need a carer to change your stoma once you get the hang of it is quite simple. Sometimes there is the odd leak but in 15 years I ve probably had mine leak maybe 6 times so not that bad.
Sorry Nannypat, I didn't write that too well, I meant change the bed not the stoma.
Just thinking about tiredness with the COPD, trying to cover all angles, really glad you posted, its always good to have someone who actually has the condition people are talking about, take care, Peta
I must admit changing a bed now with this severe COPD is a ritual but I have that down to a fine art now lol. Take of quilt sit down take of sheet sit down etc etc. lots of sitting down but I get it done eventually ha ha. It is daunting to have to make such a radical choice but I must admit I decided that no good moaning about what I cannot change so lets make the best of it. Takes a long time to get to that state of mind though and I do feel for anyone trying hard to cope with these decisions. I live alone and I know how difficult things can be. I did try to post a piccie of me in me tight dress at my daughters wedding to prove that you cannot see a stoma but I must be doing it wrong lol. Anyway good luck hun xx
Nannypat1947, the bed changing made me smile. Last week built up my courage to change my double bed, after an hour of doing a bit then sitting down then carrying on, I was really pleased with myself when all was finished. Could not find dirty sheet looked everywhere, was really perplexed but guess what I had put it back on bed... My language was certainly not ladylike. Had to start all over again.
Sorry sweetheart I was dragged out to do the shopping. You ready for a nice long cuddle now? I'll just make sure Scrobbity isn't looking. ok, come here. ((((((cuddle, cuddle, cuddle )))))). There, that better?
Well it's like this. Like everyone else I hurt. If I am miserable and grumpy I will still hurt. So, I might as well be joyful. I will still hurt but I will be having fun too. That's a bonus.
What do you call a fish with no eyes? Haven't a clue.
The yellow is for the AA . . hmmm just maybe I will join.
Now that's spooky I just mentioned my hubbies UC in Keith's Prednisolone post. He couldn't tolerate any of the medicines that are supposed to help. Some made the problem worse, others had an effect on his liver so he had to stop. Things got so bad he couldn't leave the house, had to give up work, and was in constant pain. I so sympathise Is4bell4. He suffered for about 5 years before they decided on the op. Is this an option for you? It has transformed his life completely.
okay still don't know what UC is, but I worked in homecare for 11 years, worked with quite a few people with stoma bags, can honestly say there is no smell and everyone I know with one worked with it okay. You can't see it under your clothes, its more a state of mind, if you have to have this down it will be a lot easier than you think.
The stoma is not bad at all, and he changes his pouch every 2 - 3 days (although it gets emptied a couple of times a day). He can pretty much eat what he wants, but was advised to avoid sweet corn, melon and nuts. However, he has had sweet corn mixed in as in tuna mayonnaise; he has had a few nuts (mainly covered in chocolate) he just doesn't have a handful. We go away in our caravan a lot now and he has no difficulties. When we were on holiday he went swimming everyday. He hasn't tried the local pool though, but that's more a psychological thing, worrying about people seeing the pouch. It certainly isn't obvious, but you never know how others may react. There is no danger of contamination - either of the water, for others, or of his stoma from the water. He got so bad that the op didn't seem such a terrible option. His first few days in hospital after the op he did wonder if he'd done the right thing, but that was more because it is a major op and he wasn't bouncing about in 2 days as he'd half expected. It takes a while for everything to settle down. No-one can make the choice for you, but honestly, it's probably not nearly as bad as you may think. It certainly gave him his life back.
I'm so sorry about this. As Stitch says, there must be a link, but not necessarily the cigarettes directly. I know I don't normally recommend them, but what about using ecigs again. Would that help? If its the nicotine that gels would NRT or some other type of medication help?
I ventured out this morning and purchased some cigs . . . . no no no you say, but UC is awful. Not being able to leave the house is not for me. I am hoping my exercise will help my COPD.
Morning, I don't normally post but reading your fears I just wanted to reassure you that living with a stoma is fine.
I have had mine for 15 years or more so long I cant remember lol. Anyway I went to work until a few years ago with it, I have travelled all over including Las Vegas on my own several times, with my Stoma. It doesn't need to smell it certainly doesn't show even in a my swimsuit I just put a flimsy pair of shorts over the top and can go swimming. My grandchildren are used to seeing it if they walk into the bathroom and actually don't even take any notice now. Anyway my point is my stoma does not stop my life whatsoever you just have to bite the bullet and get your life back. I now have COPD which has been a lot more problem living with but that's life as they say lol. Good luck to you and hope you feel better soon.
Awe Stitch I did not take it the wrong way, so little is known about UC and Chrones.
Sometimes I feel cross that all the funding goes into Cancer and related illness and not other diseases.
I have passed my genes on to my daughter who has PSC primary sclerosing cholangitis nhs and has only years to live unless money is funded into this disease as well.
I hope it would cheer you up a very tiny bit to know that last week a whole bunch of local people cycled toParis& back to raise money for UC & colitis research. I hear they've made 10K so far.
I wont be moaning about my troubles for a while either.
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