Tapering off prednisolone after using for 4 years

Use this to discuss your experiences of medications. Have you tried any of the new medications like colazine or remicade ? How did you find them ? Have you found some medications worked far better for you than others ?
Karencraig
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Re: Tapering off <a href=

Post by Karencraig » Sun Oct 09, 2016 8:29 am

was thinking, perhaps he needs a second opinion on the blockages. It doesn't sound like "standard". Is he a member of the Ileostomy Association. They also have a forum, as well as local groups, so a lot more people with their own experiences to share than on here.


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clarabella
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Re: Tapering off <a href=

Post by clarabella » Sun Oct 09, 2016 8:08 pm

Yeah I was thinking that as well, as it has happened a few times now (2 ended up in hospital and one was fixed at home) and it's only been 4 months since his surgery. What else could it be? Adhesions? How would they detect it? Last time they did an x-ray and it was all clear.

No he is not a member of the Ileostomy Association. I will look into it. Do they have monthly meetings etc?



Karencraig
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Re: Tapering off <a href=

Post by Karencraig » Sun Oct 09, 2016 8:42 pm

Ileostomy Association is a national organisation. There is a forum - you don't need to be a member. Local meetings, I think it depends on the local organisation how often they meet. there is also a newletter/journal which has some interesting articles. Have a look on their website at what they offer.

Adhesions. Mine were found through a CT scan.


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

clarabella
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Re: Tapering off <a href=

Post by clarabella » Sun Oct 09, 2016 8:50 pm

I'll have a look. Thanks Karen!

Ah ok so you detect adhesions with a CT scan. Wonder why the hospital didn’t do that last time? What are the symptoms of adhesions? Did you get them fixed?



Karencraig
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Re: Tapering off <a href=

Post by Karencraig » Sun Oct 09, 2016 9:37 pm

It might be done by xray as well. (I had both). Adhesions is when the scar tissue is sticky, sticks to other organs or internal bits, and kinks the bowel (as I understand it). Sometimes they shift themselves. for me I had to have them shaved off the outside of the bowel, so it was surgery, but onto the bowel, not in it.

Some people may just have a kinky bowel :D which causes itself to block.

I've had blockages from food as well which I have managed to shift without intervention. sometimes the intervention is nil by mouth with fluids until the bowel sorts it out itself. - as you'll have experience of.

But what ever the reason, your hubby's seem to be frequent, so an explanation would be nice. But sounds like they are shifting on their own, which although annoying, he's not needing surgery.

I was told its common to get adhesions within the first few months due to the surgery.


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

rogalin47
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Re: Tapering off <a href=

Post by rogalin47 » Mon Oct 10, 2016 2:55 pm

Everyone who has had abdominal surgery will have adhesions to some extent. It's not advisable to have more surgery to remove them as unfortunately the more surgery you have abdominally then the more adhesions you will end up with. Sometimes they can be advantageous as they can help stop the bowel moving around too much, the less it moves the less likely it is to kink.

Most blockages are food related and can usually be dealt with at home by withholding food until it shifts. You need to keep fluids up to prevent dehydration. Gentle massaging around the stoma can help as can warm baths and gentle exercise such as walking, also lying on your side with knees drawn up to your chest can help.

Mechanical blockages such as a kink or where the bowel has folded back on itself or one caused by adhesions should always be checked out at the hospital. Unfortunately it's not always easy to work out what kind of obstruction you have so I would always err on the side of caution and get to a&e if it hasn't cleared within 24 hours


21 years of evil UC over on 6th April 2013, welcome to Norman the stoma whose given me my life back!!

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Re: Tapering off <a href=

Post by clarabella » Tue Oct 11, 2016 11:50 pm

Hi rogalin47,

Thanks for your help Karen and Rogalin - it really does help. His blockages have cleared usually within the day by stopping eating and getting some fluid into him as last time he was very dehydrated (from the vomiting and his stoma outputting lots of water).

By the way Karen, I got him to see his doctor today about tapering off the steroids. It was his GP who has contacted his specialist about this. The GP said it was normal when tapering off the steroids. Because hubby has been on the steroids for so long (4 years) his adrenal gland has gone to sleep and it needs to wake up. This can take time. His GP has contacted his surgeon and he should be seeing them soon to see what can be done about minimizing these withdrawals.



Karencraig
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Re: Tapering off <a href=

Post by Karencraig » Wed Oct 12, 2016 6:49 am

that's great. Fingers crossed he gets off the steroids soon.


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

clarabella
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Re: Tapering off <a href=

Post by clarabella » Mon Oct 31, 2016 11:13 pm

Well he is now down to 4mg, with not too many side effects. Going down to 5mg was the worst so far. He is going to stay on 4mg for a month or so and then reduce to 3mg. These steroids are horrible. Can’t wait till he is off them!



clarabella
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Re: Tapering off <a href=

Post by clarabella » Sun Apr 30, 2017 9:59 pm

Well hubby is still tapering off the steroids. He is now on 1mg! He is having some withdrawal symptoms (achy joints, tiredness etc). The symptoms seem to last longer with each drop (about 3 weeks now). He has had his bloods checked and is all in good health.

It is frustrating sometimes as he just wants to be off all the meds. What can we do to lessen the withdrawal symptoms? I have heard stories where the withdrawal symptoms last for up to a year after the last dose.



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