Crohns / ulcerative colitis sufferers

I have had a shot of iv steroid and been told to start again coming down from 40mg oral pred. If this does not work I have to come back and will be sent to the gastro team for surgery options.
 
MOOGLEYS said:
Not really sure mate tbh. Need to see the surgeons and see what they say. I think they will do an ostomy at first due to the inflammation.
Click to expand...
I had my colon removed and J Pouch formed, if it's an option for you I would certainly consider it.
I had an ileostomy for about 3 months while the pouch healed.
 
It seems the steroids have now stopped working even at 40mg. I’m now awaiting a call back from the ibd team to be admitted today for surgery. Things over the weekend have gone a bit crazy with lots of bleeding and constant trips to toilet.

Tbh I have had enough now and need something doing. I do not want any more steroids as they are making a mess of the rest of my body and mind.
 
MOOGLEYS said:
It seems the steroids have now stopped working even at 40mg. I’m now awaiting a call back from the ibd team to be admitted today for surgery. Things over the weekend have gone a bit crazy with lots of bleeding and constant trips to toilet.

Tbh I have had enough now and need something doing. I do not want any more steroids as they are making a mess of the rest of my body and mind.
Click to expand...

I felt the same when they had me on all sorts of steroids. I really hope surgery will be a big success Moogleys. I've kind of been lucky in the sense that i've had surgery twice at very short notice. So didn't have time to really digest or overthink the surgery. There definitely still appears to be a conflict between surgeons and other health professionals. Before my first surgery I was down to something stupid like 8 stone maybe less in weight. Nothing but skin and bone. One Doctor was adamant that I wasn't "ill" enough for surgery and that they should continue with the steroids. That day in Hospital a surgeon came to see me and said he would operate on me tomorrow if this is what I want. Ran through the risks with me etc. I agreed and literally within 24 hours was having surgery.
 
Thanks mate. I’m waiting at Shrewsbury hospital to see someone now. I cannot do anymore steroids as they seem to have stopped working and just cause issues elsewhere. Does not stop every non gastro doctor trying to pump them into you though....

I’m pretty mich out of options other than surgery now.

See what happens today but I’m sure I’m in for a long wait....
 
Back home now I left after 7 hours I left of my own accord against medical advice but there was no beds in A & E or the wards and was expected to sit in A & E waiting area on a metal bench until some point tomorrow. Will chase up with the gastro team and surgeons tomorrow and try and get a proper surgical admission.

My Iron level was ok so I’m not anemic which is good.

All the staff were great they are just so overworked it’s unreal.
 
Last edited:
Good luck Moogleys, i noticed my UC flared up about 4 weeks ago. I just fell out of taking my meds and ended up not taking anything for 6 months but then i started to get bad again. I'm back on my azathioprine and i'm much better again. I take about 15mg of steroid per day and that keeps me very level. I don't feel like i have any side effects really apart from increased hunger so i'm happy to keep it as a maintenance routine. I want to just keep away from any kind of surgery and despite many trips to the loo during the day i think for me personally i'd rather have that then surgery
 
Thanks mate.

Taking Steroids as a maintenance drug is really not good mate they cause havoc with your bones and joints as well as masking other potential issues. You would be better off trying a more effective treatment like a biological which may work wonders for you with far less harmful effects.

Even max dose steroids are pretty much not having any effect with me now so surgery is really my only option. I’m not looking forward to it but I’m not bothered about having a bag especially if I can gain some kind of normality to my life from it.
 
No worries, i know you're pretty much out of options. As for the Steroids is also helps with arthritis that i've had since i was 17 and the skin scaling. My auto-immune system has been shot since i was born so the point where i think i don't even think think i make my own Steroid naturally, couple with the fact that i take good does of calcium and glucosamine i think negates the effects pretty much
 
robgmun said:
No worries, i know you're pretty much out of options. As for the Steroids is also helps with arthritis that i've had since i was 17 and the skin scaling. My auto-immune system has been shot since i was born so the point where i think i don't even think think i make my own Steroid naturally, couple with the fact that i take good does of calcium and glucosamine i think negates the effects pretty much
Click to expand...

Ah fair enough mate if they are helping for other problems too then good job.

Another bad night for me I have contacted the ibd team again and hopefully I can be admitted without waiting in A&E for days.....
 
robgmun said:
i noticed my UC flared up about 4 weeks ago. I just fell out of taking my meds and ended up not taking anything for 6 months but then i started to get bad again.
Click to expand...

I know it's a spectrum but what's "bad" for yourself?

I stopped taking meds in July 2018 and have a had a few minor flare ups but most of the time I am perfectly fine. Just wanted to compare notes, so to speak! :)
 
wingman said:
I know it's a spectrum but what's "bad" for yourself?

I stopped taking meds in July 2018 and have a had a few minor flare ups but most of the time I am perfectly fine. Just wanted to compare notes, so to speak! :)
Click to expand...

mmmm. These things are so subjective aren't they? :)

I noticed in this thread that whats ok for me is bad enough to have surgery for others

To me, before i went "bad" (and off my meds) my stools were lose and i would wake up in the morning 1 hr earlier than the time i would go for a shower, go to the toilet multiple times until i felt "empty" then go to work. I would go again couple of times again during the day and a few times in a short period before i sleep. As long as i didn't feel urgency like i was about about to have an accident when i wanted to go then i wouldn't feel it was "bad", to me that life was manageable because i had it really bad when i was struck down with it so bad i went to hospital at 19 and 28, that's when i started to just pass nothing but blood and mucus every few minutes, with pain you won't believe. i went so anemic and was a couple of steps away from a heart attack.

"Bad" to me is when i start to bleed and i feel like if i don't get to a toilet in a few seconds then i would have an accident. And that's when i feel like i need the meds. Also, eat Green Veg!!!! It makes a world of difference. I hate it but i helps! :o
 
mattyg said:
Stay strong guys

I like the humour in this thread.. Helps to keep things lighthearted sometimes.
Click to expand...

LOL yeah, when i was younger and i had to go to the loo during a date suddenly i would say i was a secretly a superhero and quickly go save a bus of kids falling off a bridge
 
mattyg said:
Stay strong guys

I like the humour in this thread.. Helps to keep things lighthearted sometimes.

I'm hoping I can make 12 months OFF the Pred....I bought a house 3 years ago and haven't been able to up my life insurance... Previous policies almost cover it but I'd rather have a nice new one too.

Chin up lads!!
Click to expand...

You get so used to it. I love it when the doctor asks you if your bowel movements are normal. Normal?! What the hell is that.

I had to change a toilet seat the other day. I said something on the lines of, I don't know how to change a toilet seat but I'm the king of ********. I thought it was funny :/
 
Well I’m now in the Surgical assessment unit at Shrewsbury and I’m having my colon removed on Thursday. The surgeons have said it’s a case of it needs to come out now pretty much as it’s so inflamed it’s causing me to be quite a bit sicker than I thought. Drugs are not an option as nothing is likely to work fast enough or at all. The risk of perforation or TMC is too high to wait any longer.

I’m nervous but also happy I’m getting something done that will hopefully help. Means I will have a bag for life...lol but hopefully a life better than now with a bag....

Now to not sleep for 2 days and await the Anxiety that will show up too....

All good fun this U/C crap....
 
You must log in or register to reply here.
Back
Top Bottom