Embarrassing illnesses

agirlsgottahaveglitter

My mum has had UC for 30 yrs and as a kid I remember her suffering really badly. The only way she could deal with it was to find the strength to make jokes about the funny smells and sounds!- I think it must be a 'mum' thing! After years of trying to eliminate stuff and sort out her diet she has finally at the age of 60 managed to work out a routine that suits her. The most important thing for her was joining NACC and realising that it's actually more common than people think. You can also get hold of a NACC card which means most shops will allow you to use staff toilets if no others are available.

Chin up though, i know it's hard but once you find out the key triggers to your attacks you can work on making your life easier. My mum loves prawn curries which is kinda the worst thing to have! She treats herself to 'sod it' weekends whereby she rewards herself for being really good and controlling her attacks every few months - although granted it's far easier easier for her especially now she's retired!

Thinking of you though!

AnnieH

I'm in hospital at the moment with my uc. worst itsever been, and fter nearly a week of iv steroids they have brought up the subject of operating:eek:

livinginhope

:grouphug: Annie,really miserable having to go into hospital,but try not to worry.Have you had previous surgery? not nice to go through,but it's amazing how much better you will feel when it's all done,all the pain and misery with be worth it in the end,promise
Hope you get better soon
LIH

Errata

atlantis187 wrote: »

Great to listen to people with different problems. I would like to share my experiance. I suffer from Pilonidal sinus disease this affect the top part of the backside. I've has 2 bascoms operation and 2 incision & drainage. I just returned to work this week after being off for 3 months and I still dont feel 100%. The hardest part is trying to explain to work about this problem because they dont really understand it and think its something am just making up.


Anyway sorry to babblin on. Would be great to hear from other people suffering from this and how they're coping.

Known in the trade as Truck Drivers Bum .
My experience of it is similar to yours, so now at the very first hint of it starting again I get an immediate GP appt for antibiotics and out of hours I go straight to A&E.
Workwise, I used to make a joke of it and explain that as well as being a pain in the ar$se I also had a pain in the !!!!!. Perhaps if you explained to work that it's an extremely serious infection and can lead to blood poisoning if not treated properly - which of course leads to major organ failure followed by death. That should shut them up.

AnnieH

Hi LIH, No I've never had any kind of surgery before - not even a stitch after having my babies. they have changed my medicine to a stronger kind. an immuno supressant i think. if that doesnt work then it be surgery. kind of worried but just want it taken away now i miss my babies and want to go home asa.

livinginhope

AnnieH wrote: »

Hi LIH, No I've never had any kind of surgery before - not even a stitch after having my babies. they have changed my medicine to a stronger kind. an immuno supressant i think. if that doesnt work then it be surgery. kind of worried but just want it taken away now i miss my babies and want to go home asa.

Are you now on azathiprine? that is an immuno supressant,pretty good stuff if you can tolerate it,be careful though as it can affect the white cell count and you become unwell very quickly,but the hospital will keep a very close eye on you
I'm amazed you haven't had previous surgery,everyone I know with UC and Crohn's has,you have been very lucky to have escaped this far.
Good luck and chin up,not nice being in hospital,but my thoughts are with you :grouphug:
LIH

sandkate

Found site couple of days ago - brilliant - but have some trouble finding way round. I have had crohns since I was 17 am now nearly 60! I work in a doctors surgery and even they dont understand the difficulties it can cause. For years I was asked is it colitis or crohns by the specialists. Had a colonoscopy age 50 - its crohns colitis! seems colitis affects one side of colon and crohns the other! Trust me to have both! Have had most kinds of treatment but only reliable one (for a few days at least) seems to be codeine - which I hate taking but really dont have much choice as cant be rushing to loo all the time at work (doctors receptionist). My sister has rheumatoid arthritis, nephew crohns and my daughter colitis - seems a genetic link we are told, but what an embarassing problem - have to take extra clothing everywhere - frequent 'accidents'. Have ruined carpets, clothes etc frequently but try to be calm about the problem - find getting upset makes me feel really poorly.

Little_Miss_Saver

Hi AnnieH

I'm so sorry to hear your in hospital. Hope you are feeling much better soon and that you are able to go home to your "babies" very soon.

Best wishes for a speedy recovery. Big Hugs to you :grouphug:

Take Care and keep us updated on your progress.

LMS xx

AnnieH

Thanks for all your lovely messages.
I'm home now - in one piece - and on the mend.

I was given IV ciclosporin - an anti rejection drug used for transplants to stop my colitis fighting my body. Luckily it worked or I would have had to have my colon removed, as I became resistant to steroids. I need to keep taking the tablet form for a few more weeks until the Azathioprine kicks into my system. On 12 prednisolone a day then down to 8 next week, then 7,6, etc.

sandymogs - OMG what huge thing for a teenager to cope with. I was terrified of it happening to me, I can't imagine how a young boy would manage. ((hugs))
Yes, my DD1 has Asperger's syndrome, but I never knew there was a link. I thought it came from her father's side as he also has another daughter who seems to be on the spectrum. I'll have to lookinto it. Thanks for the heads up.

Little_Miss_Saver

Hi Annieh

Welcome back!! Glad your home and on the mend. Your lucky to have avoided surgery!!. Lets hope the medication works for you.

Do you get the nasty side effects with the prednisolone? I'm taking Budesonide (steriod) at the moment and I'm not having the horrid side effects that I would normally get if I was taking prednisolone :j :j

Take Care

LMS xx