On a lot of tablets, but feeling very ill again - bit worried

[Rick_1138]

Hi folks,

been a wee while since i was on, i had my MRI and scope scan a few months ago and it showed wall thickening and some scarring on about a 20cm section of my small bowel.

I was put on azathioprine 100mg, and tapered on steroids for a bit. I was also put on iron tablets as my iron was very low.

However about a month ago i was coming to the end of the roids and was having a lot of gut pain and twinges, so i asked the doc if i could have a lowwer dose of roids as i had 2 holidays coming up and wanted to get through them and not miss out.

So the doc put me on 4 a day, for 2 weeks and tapering down to 3 for 2 weeks etc.

I am now on the 3 a day but going onto 2 on friday so half way through.

I am also on calcium tablets for roids.

However the last few days i have been getting very bad back and chest nerve pain (not unusual on roids) however i am alo having hot flushes, feeling like i have a head cold and muscles are very tender.

Last night and this morning i have been having pain in my lower gut and feeling very nauseous.

The problem is i dont know if this is a flare up being masked a bit by the multitude of pills i am on, or if its something wrong.

I have been on the aza for about 3 months now so would expect it to be starting to work, but am worried its not gonna do anything.

the specialist said if it isnt doing anything we can cut out the 20cm section of infected tissue and stay on the aza anyway.

i am not too fussed about the idea of surgery, if na bit worried about bags, time of work etc, but that would be explained to me.

I am more just bit worried about the sinus pain\headaches and general run down feeling i have had last few days.

has anyone else experienced these sort of symptoms on aza\pred?

cheers

 

[SarahBear]

Hi, Rick! I'm sorry you didn't get any responses until now. How are you feeling now? Have things improved any?

Hot flashes and tender muscles are possible side effects of Prednisone. Have these symptoms gone away?

:hug: I hope you're feeling better!

 

[Rick_1138]

Hiya,

I am a bit better, not having the mental hot flush and headaches at the moment

However just having some pain and discomfort in the abdomen, not as bad as before i had pred\Aza but this could be because its gearing itself up for when i am fully off pred (only on 5mg a day now for 1 week).

Got GI specialist appointment early July, so hopefully will stay settled till then. I can take ibuprofen\codine to settle pain so its almost normal, bt worried about taking profen for a while but doc says fine with normal stuff but watch the codine version which is fair enough.

Just bit worried as having D now and then and some mild pain so if the colon is thickening and the aza isnt working i would be lookign to have the 20cm section removed, which GI said he is happy to do at last appoiintment but would stay on aza afterwards anyway.

Just bit nervous about surgery and whats involved, what with certain diets, being off work, bags??

So would be asking doc a fair few Q's just to rest mind, also worried if i do need surgery i would effect my GF and I holiday in august.

 

[Cross-stitch gal]

Glad to hear that you're feeling some better! A little concerned about the ibuprofen. Many of us with Crohn's and Ulcerative Colitis aren't able to obtain it because of the caffeine. Good to hear that you've been able to keep open with your doctor though! Sending many hugs your way

 

[Rick_1138]

Odd that about caffeine, as i drink coffee\tea etc quite a bit and seem fine with that, its not like a correlation between coffee and bad bouts?

I try and avoid taking profen as much as i can, say max 4 a day and that a bad day.

 

[SarahBear]

I'm glad you're feeling better!

I understand your concerns with the ibuprofen. Could you take Tylenol instead? Ibuprofen is an NSAID and it can be harmful to the stomach. Tylenol is safer.

:hug: I hope things go well for you!

 

[Rick_1138]

Dont know if i can get tylenol in the UK, mum always hoardes it when on US trips hehe.

 

[SarahBear]

I think there's a UK equivalent, but honestly I'm not certain. It would be acetaminophen or paracetamol, trade name might be Panadol?