Embarrassing illnesses

AnnieH

I've had UC since I was a teenager (now 33), and it has got worse in the last few years since I gave up smoking. I have just been given mesalazine enemas _pale_ as the tablets were making me worse, and I'm not sure they are helping at all TBH.

Does immodium work in the short term then Nicki? I bought some for standby (in case I wanted a day out or something) but it said on the leaflet not to take if you have UC, so I didn't dare take it for fear it might make me really poorly or something, as does ibuprofen.

It's nice to see I'm not alone

Baileys_Babe

My bil also has UC currently under control. He seems to have major flare ups approxamatley every 3 years, predict later this year. Usually resulting in many months off work and weeks in hospital, often requiring blood transfussions. With the complication that the steriods cause diabetic symptoms meaning he has to also take insulin. He tries really hard to reduce the impact to the rest of us but it is so sad to see a lovely young man so disabled by such an illness. Like others have posted he often has to carries spare clothes, which can draw attention to the symptoms of an illness many would wish to keep private.

Nicki

Does immodium work in the short term then Nicki? I bought some for standby (in case I wanted a day out or something) but it said on the leaflet not to take if you have UC, so I didn't dare take it for fear it might make me really poorly or something, as does ibuprofen.

It works to an extent for me but not perfectly. Probably diminishes frequency by half and helps with the urgency problems. I was told to take it by my consultant but at a lower dose than recommended on the pack. It may be worth asking your own doctor whether you can also try it and at what dose. I was also put on steroids and anti-inflammatories on a long term basis but these seem to make no difference to the frequency of the attacks or the severity since I unilaterally decided not to take them, though I would consider them again for short term use for a bad bout.

Like BB's OH I've been hospitalised with this in the past, and it is a real pain.

Little_Miss_Saver

Hi AnnieH

My symptoms actually improved since I gave up smoking and I haven't been hospitalised since which was 4 years ago!!! I once read in a NACC newsletter that smoking can help UC sufferers but obviously they didn't encourage you to start smoking lol :rotfl:
When I smoked I would be in hospital every 3 months for 2-3 weeks depending on the severity of the flare up and was constantly on steriods which I hated.
I'm unfortunatley sensitive to the drugs commonly used to treat UC & Crohns and have to take Azathoprine which I have now taken for 8 years with not too many problems.
I still have bad days where I need to be near a toilet and will refuse to leave the house for the fear of having an "accident".:o
Do you have a radar key? I keep meaning to get one but never seem to get round to sorting it out!!!

It amazes me how many people suffer from these conditions, I'd never heard of them until I was diagnosed myself.

LMS xx

livinginhope

Hi there,totally sympathise with you all here,I too suffer with Crohn's disease,I was diagnosed 9 years ago,but we think I have had it for about 20 years I have had 4 bowel ressections in the last 8 years.I haven't actually had a confirmed flare up for a little while,but due to a very shortened bowel,I suffer with constant loo visits,sometimes I just won't go out of the house,it's so embarassing,I had an 'accident' in Tescos a few months back,people were very sympathetic,but I wanted the ground to swallow me up,I was mortified,I didn't even realise what had happened,my DH pointed it out! Tesco were brilliant,they actually gave me a new outfit to wear,but I don't like going in there now,as I'm known as the girl who messed herself I hate feeling sorry for myself,but that is how I have felt for a little while now.
LIH

Little_Miss_Saver

livinginhope wrote: »

Hi there,totally sympathise with you all here,I too suffer with Crohn's disease,I was diagnosed 9 years ago,but we think I have had it for about 20 years I have had 4 bowel ressections in the last 8 years.I haven't actually had a confirmed flare up for a little while,but due to a very shortened bowel,I suffer with constant loo visits,sometimes I just won't go out of the house,it's so embarassing,I had an 'accident' in Tescos a few months back,people were very sympathetic,but I wanted the ground to swallow me up,I was mortified,I didn't even realise what had happened,my DH pointed it out! Tesco were brilliant,they actually gave me a new outfit to wear,but I don't like going in there now,as I'm known as the girl who messed herself I hate feeling sorry for myself,but that is how I have felt for a little while now.
LIH

Oh my god!! Luckily that's never happened to me, its bad enough not being able to make it up the stairs in your own home without having an accident but to have that happen in the middle of tesco's - I don't think I'd be able to go back either.
I know what you mean about feeling sorry for yourself, when I get like that I keep telling myself that I'm alot better off than some people (but sometimes that dosn't work and I drown in my own self pity until I snap out of it)
It really helps to know that there are people out there that really "understand" what you go through and know that I am not alone with my symptoms/experiences!! And you definatley need a sense of humour!!!.

Take Care

LMS xx

AnnieH

Yes I had an accident a couple of weeks ago :o:o
I was walking home from work and I just couldn't stop myself. Luckily I wasn't too far from home and I just wrapped my coat round my waste (LOL freudian slip - I did mean waist:rotfl:), phoned my childminder to say I'd been held up at work and would be late, and went home to get washed and changed:o:o

Kay_Peel

When I was diagnosed with Ulcerative Colitis, one of the nurses helping the consultant said: 'I bet you used to be a smoker'. When I said that yes I had, she was almost triumphant in her smugness. I felt bad enough without being told it was 'my own fault'.
Anti-inflammatory drugs and steriods made no difference. I had some embarressing episodes, too. Then there was a turning point.
I was invited to go on a camping trip and wanted to go, but thought I wouldn't be able to manage it. I thought back to what the nurse had said and I went out and bought a packet of cigarettes. I didn't have one single twinge, or feeling or urgency and I enjoyed my camping trip like no other holiday that I've been on since.
That was in 2003. I've smoked ever since and the UC has never come back. I don't like smoking and wish I didn't - but I can't go back to the alterntaive. UC was ruining my life and cutting me off from normal activities that people take for granted. It frightens me that I may be storing up trouble for myself - what will happen if I have to give up smoking for health reasons? Will I be saddled with smoking-related chronic illness as well as Ulcerative Colitis? Probably - and it doesn't bear thinking about.

k.

AnnieH

Yes - I must admit, I have been tempted to start smoking again, but I think it would make me physically sick if I smoked afag again. My hubby smokes and I hate the smell of him when he's had one:(

I have tried nicotine gum to try and reduce symptoms but it was really foul stuff.

livinginhope

I never knew there was a connection between smoking and UC/Crohn's? I wouldn't blame yourself though,I have NEVER smoked,but I still got Crohn's,until they actually find out what causes it,they will always try and blame anything they can.I have been told that I could have Crohn's because my father was given all sorts of chemicals and meds when in the Navy before I was born,they then said that I could have had a milk allergy when a baby,which is also linked,I have been told that a very serious bout of food poisoning (E coli) could be a factor,I have had some very bad life experiences one on top of the other,they say stress can bring on UC and Crohn's.
All these assumptions are just that,assumptions! no proof,no cure,no idea!
Please don't blame yourself,life is unfair enough as it,without the medical profession blaming you for causing your own illness.
I just want to say that I had another near miss at the weekend,we went away and I 'needed to go' there was as usual a queue in the ladies,fear of embarassing myself took over and I pushed everyone aside and barged to the front jumping into the first empty loo,the shouts and remarks had me in tears,but when I came out with tears rolling down my cheeks,people apologised,it then turned into a discussion on what Crohn's is all about and how badly it can affect someones life! I hope there are now a few more understanding people around the rest of the weekend was spent high as a kite on codeine