Embarrassing illnesses

AnnieH

mollybilly wrote: »

Hi Annieh, ive just joined about 2 mins ago, was browsing through, looking for beauty tips actually, when i came across your thread. Well, ive got crohns disease, which is similar to what youve got. Ive had it for 20 odd years now. Its been well embarrassing over the years, i never used to tell anyone my problem, but now i dont mind so much. Are you working at the moment, and how are you coping?

Hi mollybilly and welcome to MSE - it's very addictive, I warn you now:)

I work as a dinner lady, but when I'm at work I can't "go" even if I really want to. It just won't happen. It's when I'm half way home and have that "uh-oh" feeling that it's the worst.

I've only had 1 day off sick though with it, as I hate taking time off. I dropped the baby off and went straight to bed for the whole day.

My recent bout has brought another embarrassing illness with it as well. I have been stricken with the worst case of "Farmer Giles" I have ever had in my life. I have 3 children, so I know pain, but I feel like crying with this. It's SO painful. I'd rather have the UC!!! I've been to the coctor (again!) this morning and got some steroid cream - I really must buy a PPC - it will save me so much money!

Thatnks for all your replies - it's reassuring to know there are lots of us out there.

Am I right in thinking that if you join NACC you can get a radar key? That might be worth a look into.

mollybilly_2

Hi everyone, and thanks for your replies. Yes, MSE is proving to be addictive already!!! i didnt have time when i was in work, but being off sick and feeling soooooo tired all the time, well, theres not much else to do, is there. Im hoping to go back to work soon, just really fed up. Everyones saying make the most of being at home, enjoy the weather etc, but when youre in pain and knackered, nothing seems very appealing. soooo sorry, im moaning again, must stop!!! Anyway, i started looking on MSE for some ways to save some cash, no overtime at the moment to bump up my pay, and a holiday booked for `16 weeks time (yippee!!!) but have come across all these wonderfuthreads, full of people likeme, with problems like me! Dont feel so bad now! Anyway, better go, the highlight of my week tonight, the weekly shop! Im serious, havent been outside the door since last weekend! Lets see what bargains there are to be had in asda, shame ive gotta take the kids though, id save a fortune if theyd stay behind, but my lot are weird, they love shopping with mum and dad, sad isnt it!!!

livinginhope

AnnieH wrote: »

am I right in thinking that if you join NACC you can get a radar key? That might be worth a look into.

Hi Annie,you can buy the radar key from https://www.radar-shop.org.uk/ I think it's £4.11 including VAT and delivery,well worth it I'd say
LIH

AnnieH

Thanks LIH - I've just ordered one
It will help no end as I would be way too embarrassed to jump queues (I'm far too English LOL)

livinginhope

You're welcome annie.
That's where we differ,I have no shame,will jump the queue if I have to,totally shameless me :rotfl: :rotfl: only joking,I hate jumping the queue,but when you can't wait,what else can you do?
LIH

AnnieH

That's why I need to carry a change of clothes with me when I go out

SparkyG

Hiya all

Have been following this thread with interest, and can relate to all the posts! I was diagnosed with UC in 2004 and had an extreme flare up for about 9 months before it was under control. Took loads of medication- Asacol (which I still take for maintenance), prednisolone, both orally and suppositories, codeine and also sulphasalazine, which didn't suit me at all. The cost of the drugs was daunting, but I paid for a yearly season ticket as I was also on anti-depressants and anti-histamines for hayfever, and although the initial cost was horredous, I did save money long term.

What shocked me (and my consultant), was that I seemed to get every side effect going from the UC. I had rheumatoid arthritis, which left me unable to walk. The only relief I got was taking codeine and tramadol together, which at least enabled me to get upstairs to bed. I also had pyoderma gangrenosum, which are horrible blue-ish red ulcers on the knuckles which were very painful. Vasculitis, a circulatory disease, which resulted in painful chilblain type lumps on the fingers and toes. Uevitis, which is inflammation of the eyes. Not to mention constant horrible painful mouth ulcers! My consultant said that the chance of getting even one side effect was about 5%, but unfortunately I got the lot.

Oh, forgot to mention I also suffer from IBS. When I get a flare up of that I am terrified the UC is starting up again, but so far so good, I haven't had problems with the UC since 2005. I take 4 Asacol daily and am very careful with my diet, and there is no way I would stop taking my maintenance drug. I am too terrified of going through a flare up again. I am amazed when talking to fellow sufferers that they stop taking a maintenance drug just because they feel ok. I do know that it could come back again regardless, but to me the drugs are 'insurance'.

Very best wishes to fellow sufferers. I can relate to how you feel:o

SparkyG

mollybilly_2

Hi there sparkey. Ive had pyoderma gangrenosum on a few occassions over the last 25 years of having crohns, and ive never known anyone else whos had it. When i first got it, even my consultant had never seen it before and didnt know much about it. I found that it was even more painful than the crohns itself, if thats possible. Ive started suffering with bad joint pains for the last few months, and am undergoing tests for rh. arthritis. How are youre joints at the moment? Do you get flareups at the same time as your uc? How do you cope with work with the arthritis? Sorry for so many questions, but its good to find others in the same boat.

SparkyG

Hiya Mollybilly

So sorry you are still suffering. I suppose I am 'lucky' in that I have only had one episode of UC. It did take 9 months to get under control, and I was off sick from work for about 8 weeks of that period when it was chronic, as I just couldn't walk for some of that time, and was going to the toilet up to 30 times a day! Steroids got the RA under control, but I was very agressive and hyper:mad: . Now, I have absolutely no problems at all with joints (apart from the usual aches and pains and stiffness associated with age - I am 52 ) . I take high dose cod liver oil and glucosamine, so maybe that helps?

My consultant had only seen pyoderma gangrenosum once before, and wanted me to take pictures of it:rolleyes: for his records! It was so painful, and I remember brushing my knuckles against something at work and being in tears with the pain:o

Hope you soon feel better:beer:

SparkyG

AnnieH

I am one of those annoying people who stops takingtablets when I feel OK. It's not to do with anything other than when I don't "need" to take them I simply forget. Which is why I was no good at taking the pill:)

I'm not taking anything at the moment as I was taking mesalazine but it started to make me worse. Then the doctor gave me the mesalazine enemas which made me really bad - worse than I had been for 10 years. I feel quite lucky though as I seem to have it quite mildly compared to some of you on here.

What's the problem you get with your eyes? How does that manifest itself? I have a problem with one of my eyes, but I didn't relate it to my UC. I get stiff joints, when I'm flaring up, and I feel very tired all the time. Plus I've got a gobful of mouth ulcers