Prop me up please

[soupdragon69]

Hi Folks,

Well here I am after gastro clinic yesterday.... The upshot is I have started Metronidazole (Flagyl) for 2 weeks and Ciprofloxacin for 4 weeks. Cons told me if I dont pick up in the next couple of weeks he is admitting me and I will have to be fed via a tube into my stomach.

I have been on elemental drinks since the week before Xmas. Tried eating on two separate occasions and ended up in agony. I have been on Pentasa since February. Monday week ago I almost collapsed at my GP's and was so drained I spent the next day in bed. Yesterday my GP wanted to put me back on steroids as my asthma is now unstable and I have a sinus infection, ear ache, sore throat etc etc.

Gastro wants me to increase my Imuran from 100mg to 150mg for two weeks and then to 200mg for two weeks. He says he is aiming for 250mg with me. Wants my white cell count to be 2-3 max whereas its around 7 at the minute.

Gastro also said I now meet the criteria for Remicade - oh joy. I go back to clinic in 4 weeks time again and have to yell at them if I run into probs before then. My GP wanted to put me off work last night when I saw him and despite the fact I want to just lie down and curl up I just dont want to give in yet!

It galls me I have to give in to this thing! Does that make sense? Now I am sitting with the tears tripping me ggrrrr.

Sorry for whinging - I just needed to say it to someone that understands what I am raving about.

Jan

 

[Nancy Lee]

Ah Jan,

I'm so sorry you're having a rough go of it.
I do hope the doctors get it sorted out soon.
And any time you need a place to rant or cry..
you know you can come here and we'll listen.

We may not have the answers, but we have compassion
for our fellow Crohnies.

Healing hugs to you~Nancy

 

[soupdragon69]

Hi Nancy,

Thank you so very much for your kind words it means alot right now.


I have ended up off work since wednesday week ago and have now started my third lot of prednisolone steroids in two weeks (5 days at 40mg then go back to GP and end up on them again).

GP told me last night he thinks I have gastroenteritis related to my crohn's because of all the drugs I have either commenced or upped the dosage on. My asthma is still playing up too.

I am really sorry guys if I am a moan right now - everyone that knows me better would tell you it just isnt like me at all. My GP last night said he was worried as I have lost my spark and he wants it back. He said for me to say I am drained and cant stand for any length of time is bad news.

Anyway, I will go back to bed again and do as I am told by all and sundry and rest!

Thanks again Nancy.

Jan

 

[TammySue62]

Hi Jan
So sorry about all the problems you are having
at this moment.
I have been on TPN tube feeding. The last time
I was on it for 8 months did wonders for me even
gained 35lbs. The whole idea for this is to let your
bowels rest and get the proper nutrients that your
body needs.This also means that you will go home
with an IV or picc-line in your arm and administer the
fluids at night so your free to carry on with your day to
day activities.You will also feel great strong ambitious also.
I would consider asking your Dr. for this right away.or go
to the hospital because right now you sound pretty sick
and your also very week, at least get an IV started in you
for some fluids. You dont want to dehydrate . I have been
there as sick as you are now. I couldnt even get outa bed.
Seriously I would be calling my GI now before you get worse.
I will be thinking about you and my prayers are with you
Goodluck Tammy Hang in there.

 

[ruthymg]

Hi, so sorry you're having a rough time of it, hope things start to look up for you soon. Don't see, having time off work as giving up, it sounds as though you could really do with the rest right now. Overdoing things certainly won't be helping you. See it as a momentary blip in this stage of your life, it will help you in the long run. Keep us posted on your progress


Ruth

 

[soupdragon69]

Hi Ruth and Tammy,

Thanks so much for your replies it really helped me to cope through the past few weeks.

I saw my gastro cons last Monday (they pulled me in early in view of how I was after I contacted them) and he told me I needed remicade and was to have it before the end of this week.

I had my first infusion yesterday and am to have my second in two weeks time - 7th June. Then a third six weeks after that. He said they would load me with it faster than the normal 8 week doses as my crohns was so bad and I needed some stability fast.

They said the elemental was doing nothing for me after 5mths on it and I was to start eating again as long as I stay wheat, dairy and rice free until we retest them later when I am better than the state I am in now.

The specialist nurse came and saw me yesterday during my infusion and said if this doesnt work they are looking at admitting me for IV steroids and probably surgery. They are all keeping their fingers crossed it works. So am I funnily enough.

I had no probs with the infusion just very wobbly legs and tired with a nice headache yesterday and dont feel too bad today so we will see eh?

My occupational health cons wants me to stay off work until she gets a report from gastro as I am so exhausted and my GP agrees. I accept it all now and will do whatever it takes to get some stability.


I just wanted to say thank you to you both from the bottom of my heart for your support and thoughts. It meant alot and that I wasnt alone.

Ruth I really hope your op is sorted out soon. Tammy I hope you are doing ok.


Jan