Weekend nightmare

Bovey

We went to Cornwall for just two days over the weekend. On Monday my body decided to land me in Truro Hospital. Not only have I got ankylosing spondylitis but it appears I now have ulcerative colitis or crohns. Too soon to say which yet. The pain was unbelievable.
Believe me developing that illness in a campervan is no fun, my poor husband.
The paramedics and staff at the Truro hospital were fantastic, more than fantastic. I am home now awaiting with trepidation, and a very sore tum, at what the future has for me. My GP told my husband that I don't seem to have much luck with my health.
Bit fed up at the moment, and scared. Got visions of operations to remove bowel, colon bags and more. On 2hrly Oramorph at the moment, feeling awful.
Has anyone else got this double whammy. How do you manage?

daffy2

What a horrid time for you. I have IBS so have a bit of an idea of the pain and problems you encountered, and I agree a campervan is not ideal at such a time - but possibly marginally better than a tent and a distant toilet block? The prospects will seem frightening at this stage, but it's early days, and it may respond to treatment. However, removal of the offending bits, if it comes to that, may not be as bad as you fear.A friend of mine who suffered for years with colitis/crohns(the medics kept changing their minds), the drugs involved,and the limitations on her life, finally had surgery and has come to the conclusion that it was a good move.Once she had recovered from the op and started to get to grips with the practicalities she found life was getting a lot easier, partly because she was able to reduce her drug intake, but also because she could start to take control of her condition. I read somewhere that the Queen Mum was a 'bag lady', don't know if it's true, but if so she was a pretty good advert!

stickywicket

That must have been a very scary experience and all the more unpleasant for occurring while you were on holiday and in a camper van.

Ulcerative colitis and Crohns are both auto-immune disorders so I guess it's not unusual for either to appear when one already has an auto-immune version of arthritis. I was once in the next hospital bed to a lady with RA and ulcerative colitis.

Try not to get too far ahead of yourself. Your worst fears might never materialise and, even if they do, might not be anywhere near as bad as you fear. One of my husband's golfing friends has a colostomy bag and leads a very full, active life, travelling all over the world.

Deal with the present and try not to speculate about the future. I hope it turns out to be not as bad as feared.

dreamdaisy

Oh dear, that kind of double whammy is not unknown on here but what a scary place to start the new one. I'm with Sticky et al, it may not be as bad as you are initially fearing but only time will tell (as it does with everything in life). I hope you're not researching too much on the interweb but if you are please stick to responsible sites, OK? DD

Bovey

Thanks everyone. Feeling really ill today, now spiked a temperature, pain ++. Why is it some of us get all the bad health and others sail through life. Called " ****'s law" I think. Will take your advice and leave the dubious internet sites alone. As a retired district nurse I remember too much about it anyway! I didn't know how painful it was though! Might have to ring GP service. Thanks again for support.

Kittkat

So sorry to hear you are poorly. Try to think of the worst and take things as they come. My dad had(s) ulcerative colitis and is now quite well.

Megrose489

So sorry to hear that you're feeling really poorly. I hope that things improve for you soon.

Meg

Starburst

Oh Bovey, my heart goes out to you. My mum has ulcerative colitis and my cousin has Crohn's, so I know it can be very painful especially in the initial pre-medication period. The medications are very similar to those used for inflammatory arthritis too, so hopefully you just need an adjustment - depending on what you're already one? With well controlled inflammatory bowel disease you can live a normal and fulfilled life. I've got my fingers and toes crossed for you that they can get you started on treatment ASAP.

ichabod6

I have rheumatoid arthritis and crohns disease and live with my bum on my belly. Bonus point? The two medications I take, humira and azathiroprine help control both conditions, and my life is a lot easier since surgery, almost four years ago now.

barbara12

Oh bovey what a rotten end to you break, this crohns seems to go cap in hand with some inflammatory arthritis...my son has lived with this for many years now don't worry he hasn't had a colostomy..but like you say has a retired nurse you know a bit to much..I do hope it settles down very soon..

Bovey

I shouldn't have got this as I'm on humira, have been for 18 months. The surgeon was surprised. I think the rheumatologist might conclude it isn't working and stop it. I can't go back to how I was. The Mesalazine will work soon hopefully. Steroids are a non starter-allergic to them. Life can be bad sometimes

Starburst

Perhaps it depends on the type of IBD? I think they treat Crohn's and UC slightly differently, especially depending on the location of the inflammation.

Take good care of yourself.

hileena111

Oh Bovey
What a rotten break for you...especially in campervan.....we go away in the caravan {touring one not a static} so I can only imagine. I know little about the two diseases but think about what we tell new people??......they come on here, newly diagnosed with some form of arthritis and wonder what the future holds for them :?: We tell them not to think too far ahead. Try not to think too far ahead ......I know its hard and being an ex nurse makes it worse.....I am as well although I am trained as a nurse for people with mental subnormality I KNOW I SHOULDNT SAY THAT....but I'm an RNMS it is now Learning difficulties.
I trained for 3 years like a general nurse but we focussed more on psychology, sociology and psych end of things.
Even after all these years I can be a nightmare to docs because I know a little Question things, tell them that one med is contraindicated to another one I take
Keep us up to date with what happens please
Love
Hileena

Bovey

My rheumatologist has suspended my humira. Feeling lower than low.

stickywicket

I'm sorry to hear this, Bovey. What's the plan? (I presume there is one.) Hope things will settle down and then resume humira?

mig

Hi Bovey,I'm sorry I've only just read this ,what a rotten thing to have happened ,I can't offer any help I can only say we are here for you so I'm sending some hugs (((()))) Mig

dreamdaisy

Oh Bovey. I am so sorry, what a disappointment. Be kind to yourself over the next few days, take some time out to regroup; we're here if needed. DD