Hospital, IV steroids, arthirits and surgery

[KayleighK]

Sooo this is my 3rd night in hospital. Doctor comes to talk to me yesterday and informs me I have arthritis! I'm only 22 feel like an old dear. Then this morning doctor tells me my blood results are looking great. Was over the moon and to be honest I'm feeling better. He tells me that maybe inflixamab isn't the way to go and maybe surgery to remove the diseased intestine may be the best option for me. So lots to think about. As it is xmas I was allowed to go out during the 6 hours between my steroids. Overjoyed at this point just as I'm getting ready to leave the doctor want to talk to me. He asks if I feel I'm coming down with something cold or cough?? No I reply. Why? Because your white blood count is high again!!! Come on what's going on steriods. Don't trick me you can do it I know it!! So I'm awake now cos the very odd lady next to me just woke me up by attempting to go to the toilet still attached to her drip banged into my bed and farted then just stood there waiting for me to help her. Has anyone else while on IV steroids noticed an improvement then within the same day a decline??? Thanks guys for reading.

 

[DustyKat]

Hey Kayleigh,

My son had that happen to him earlier this year and it was due to him having an abscess. Are you on IV antibiotics as well?

Dusty. xxx

 

[KayleighK]

Thank you very much for responding. Oh that's awful! No I am not the only thing I've been given extra on these is an anti-acid. My stomach is quite painful this morning. I shall definitely mention this to doctors this morning xxx

 

[DustyKat]

That's interesting. I'm not suggesting you have an abscess but you are flaring, yeah?
It's just that in my experience it's unusual not to have you on at least one antibiotic, usually IV Flagyl, as well as IV steroids.

Matt had 2 abscesses and he was being treated for them over a period of 3 months in the lead up to surgery. During that time his white cell count and CRP fluctuated quite a bit.

Dusty. xxx

 

[toneloc]

Hi KayleighK

I was in Hospital from 17.12.11-24.12.11 with a major flare too.DX Crohn's Nov 2010
I have also been diagnosed with Arthritis (am 45 yrs old). Had hydrocortisone IV for 5 days, and was allowed home with a 4 week course of Betamethasone as pred does not suit me. I am still bleeding from the flare which has been going on for months. I had a colonoscopy on 14.12.11, they took 12 biopsies which really upset things, sparking off a PR haemmorage
Have to return tomorrow for more torture and return to my room.
See if they can put you in a side room, this is where i was located, en suite facilities much better for dignity & ease of access to the toilet as I can be in there for 20 mins at a time on the loo, cleaning up, applying medications and even having a shower afterwards as sometime I do not make it in time.
This, in my opinion is essential

 

[David]

Hi there. What area of your body has the arthritis? How much intestine do they want to remove? And what part specifically? And how diseased is it? For example, is there just active inflammation there or is there scar tissue/stricture?

Sorry for all the questions

I wish you all the best!

 

[KayleighK]

Hi all just to say a massive sorry for being so rude and not replying!! But I'm having so much bother with my fingers I couldn't use my phone. Mega joint pain and my hands keep cramping in the most weird and wonderful positions. Sadly I couldn't get a side room there was no room. But I did my usual go into hospital and get to embarrassed to poo!! Doctor wanted me to have an x-ray but all it showed was that I was very backed up with faeces. How lovely. I was on 100mg of IV hydrocortisone for 4 days. I have left the hospital on 40mg of pred again. My white blood cells are still raised but the doctor is still hoping that azathioprine is just taking it time to get into my system. As always different docs have different opinions. As for surgery it is 10cm of small intestine. Its just inflammation the now. they suggested removing but another doctor said as I was only 22 she would much rather I tried infliximab rather than opting for surgery. I have a review with my GI in 3 weeks to see how I'm getting on. To be honest I definitely feel better than before I went to hospital but still not great. Stomach still in pain and going to the loo more than I'd class as normal. Toneloc I hope you got on ok?

 

[David]

Nothing to apologize for

If you haven't already, I'd have them test your vitamin D levels. Vitamin D can help you with that arthritis if you are indeed deficient which many Crohnies are.

 

[guest9933]

With your fingers cramping in all sorts of places is from the hydrocortizone and pred won't be much help I was in hospital mid november and had IV steroids and same thing happens to me even on pred I hate that stuff.

Your lucky i'm 29 and they want to take out my whole large intestine and rectum and they can't gurantee a re-connection so I'm have infliximab to keep the surgery away.

I had the same thing was on the steroids for a few days and had x-rays I was also severly constipated but I get constipated from steroids.

I would suggest getting your magnezium levels checked as it's very common for you to be deficiant in magnezium from the steroids this will also help open the bowels as I started taking magnezium my bowels started working and I shat for a whole day straight never seen so much poo out of 1 person

 

[toneloc]

Hi KayleighK
Sorry to read of your nightmare, it appears that we have had similar experiences over the last wee while. I was in a room next to another man, he was in with Crohn's and was 26 yrs old. We exchanged our tales of woe :-( They mentioned infliximab to me as I'm on 6-MP and dosen't seem to be working I may see the GI at some point in the future for follow up, just have to wait & see.

Hope you get over this one ASAP, I REALLY FEEL FOR YOU!!!!!

Update

I had to go back into hospital for a couple of nights as my potassium level was very low, so was force fed supplements tablets to improve things and was finally discharged on 29.12.11

The bleeding continues, but it is much less than before. My poo has returned to a regular shape, mottled with blood, but better than it was. I still have pain etc, but hopefully things will get better.

The Betamethasone seems to have similar effects to the pred. Having been on hydrocortisone for 5 days in hospital and will be on Betamethasone for 4 weeks I do feel slightly crazy. These steroids are heavy duty!!

I feel a 'buzz' and a tingling on my skin, and when I pinch myself, it does not really hurt. My libido has reduced significantly and I feel tired most of the time. I am tapering down on the Betamethesone fairly quickly. The doctors want me off the steroids in the shortest possible time.

Anyone had any similar experiences & how long was it until things returned to normal?

 

[outlier]

welcome to arthritis. i was dx at 27 with arthritis. there is a forum of arthritis that is temporary due to stomach issues called reactive arthritis.
good luck