Sobs: I am really struggling at the... - Lung Conditions C...

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Sobs

Is4bell4 profile image
38 Replies

I am really struggling at the moment. Gave up smoking (no problem) but my UC has kicked in again.

This problem is so on going for me. Time and time again I give up and then end up in an NHS bed!

Do I smoke and be UC free.

Geez I feel really poorly, and the heat does not help. I now seem to be allergic to pollen. My eyes are

swollen and I feel crumby.

May I add a big thank you to Carole. xx

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Is4bell4 profile image
Is4bell4
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38 Replies
Is4bell4 profile image
Is4bell4

Will this post????

Is4bell4 profile image
Is4bell4 in reply to Is4bell4

Where is Bobby when I need a smile .. . . . . . . . . .

in reply to Is4bell4

Hi Is4bell4

Sorry but can you tell me what UC is, then I can google it and see what effects it has on you.

Take care

Peta

Is4bell4 profile image
Is4bell4 in reply to

Ulcerative Colitis Slade.

Sorry if I am feeling down at the mo!

Is4bell4 profile image
Is4bell4 in reply to Is4bell4

youtube.com/watch?v=JMApMBY...

Is4bell4 profile image
Is4bell4 in reply to Is4bell4

youtube.com/watch?v=71MGdqZ...

in reply to Is4bell4

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?

Peta

Is4bell4 profile image
Is4bell4 in reply to

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

in reply to Is4bell4

could you not have a carer come in daily to do that if it was needed.

Nannypat1947 profile image
Nannypat1947 in reply to

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.

in reply to Nannypat1947

Hubby now got it down to a fine art. Doesn't take him long at all. Had a leak to two but that was in the early days.

Is4bell4 profile image
Is4bell4 in reply to Nannypat1947

Phew . . Thank Nannypat . . . perhaps things are not so gloomy for me . . hugs for that . . truly mean it.

in reply to Nannypat1947

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

Nannypat1947 profile image
Nannypat1947 in reply to Is4bell4

sorry I did do a reply but seems to have gone to the top of page. If you would like to know m,ore please let me know.

Is4bell4 profile image
Is4bell4 in reply to Nannypat1947

I would NPat . . I am not so old. But suffered with UC since in my teens.

Arghh . . . there goes my swimsuit.

Nannypat1947 profile image
Nannypat1947 in reply to Is4bell4

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

nixy profile image
nixy in reply to Nannypat1947

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.

phillips1 profile image
phillips1 in reply to Is4bell4

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?

Lots of love and hugs from Bobby xxxxxx

Is4bell4 profile image
Is4bell4 in reply to phillips1

Bobby the light of this site, Tell me how do you manage to keep smiling. I try but get worn out trying at times.

Nah, get my other cap on and ask you this . . . .

What do you call a fish with no eyes?

phillips1 profile image
phillips1 in reply to Is4bell4

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.

Bobby xxx

Is4bell4 profile image
Is4bell4 in reply to phillips1

FSH lol Bobby . . . you should have got that one!

Is4bell4 profile image
Is4bell4 in reply to Is4bell4

FSH no eyes hahahahah

phillips1 profile image
phillips1 in reply to Is4bell4

You will see a little yellow van pull up outside soon. The driver has a nice new jacket for you to wear. lol

he he he.

Love from Bobby xxx

Is4bell4 profile image
Is4bell4 in reply to phillips1

I think a white jacked more appropriate Bobby . . .

xx Ros xx

Is4bell4 profile image
Is4bell4 in reply to Is4bell4

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.

Is4bell4 profile image
Is4bell4 in reply to

So sorry I am still having problems with my posts.

This is to Stitch as well (thx)

My specialist knows that I chose to smoke, no answer to what is in cigarettes (not nicotine) that

hold UC at bay. Now I am in a catch area . . . . COPD and UC. I feel grim.

Is4bell4 profile image
Is4bell4 in reply to

The op is one thing that I dread Carrie . . . I have already had an 'X' marked on the spot

but escaped with steroids.

I guess it will happen soon but I am not ready as yet.

I worry, because I am on my own, COPD as well that I will be too tired to manage

a stoma. Please tell me it is not so bad?

in reply to Is4bell4

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.

Take care

Peta

in reply to Is4bell4

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.

Lynne1955 profile image
Lynne1955

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?

Lynne xx

Is4bell4 profile image
Is4bell4 in reply to Lynne1955

Awe Lynne . . thx but it is not the nicotine, I tried the patches under my specialist.

Something hidden in the toxins of cigarettes that has not as yet discovered.

xx Ros xx

Is4bell4 profile image
Is4bell4

No not my Diet Stitch . . UC is not getting enough funding at the mo (along with Chrones)

I have had it for a very long time and (maybe smoking) I have managed to live some quality

of life. Now it is getting me down along with COPD xx Ros xx

Is4bell4 profile image
Is4bell4

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.

Life, I HATE IT!

Nannypat1947 profile image
Nannypat1947

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.

Pat

xx

Is4bell4 profile image
Is4bell4

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.

primary sclerosing cholangitis nhs

peege profile image
peege

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.

All the best to you xxx

Is4bell4 profile image
Is4bell4 in reply to peege

Oh WOW that is good news. UC and colitis are the same thing/ Go on, tell me about your troubles, an ear is a good thing to us all peeg. x x Ros x x

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