Hi everyone, I'm new!

[Astra]

Hi My Name is Joan and I'm 46. I got a diagnosis of Crohns in 2005 after nearly 15 years of being told I had IBS! I even had a radical total hysterectomy after going down the gynae route, til I found a brill gastroenterologist who eventually believed me! It's been hard, sometimes I feel what's the point of eating, may as well flush it down the toilet, cut the middle man out! ha ha!
Seriously tho, I've just spent a week in hospital, and apparantly I nearly died! I started to vomit violently and terrible diarrhaea then the pain! worse than childbirth, and that's saying summit! The GP came to visit and ordered an ambulance, he said my bowel was ready to rupture! He saved my life! I was pumped full of anti biotics and slept for 2 days, my CRP levels were 261! the consultant told me people with pneumonia don't have CRP levels that high!
Gotta stay off work now for 3 months cos I'm immuno suppressed and on 40mg of Prednesolone steroids and still taking 8 Pentasa a day too. If there is anyone else on these steroids, any tips? Feel really sick, dizzy and depressed with them, I try to sleep each afternoon cos I'm so weak and tired. Appreciate some help, feel soooooo alone xx

 

[Crohn's 35]

Hi Joan, welcome to the family Crohnie forum. I am so sorry you went throught alot! I know about the natural childbirth and blockage or severe acute attacks. I'd be in labour preferrably... . I am glad you are here and are seeking help. Prednisone is not one of my fave drugs, I avoid it and being older myself I wonder about the calcium loss. Prednisone in high doses can make you jittery, avoid coffee or caffeine it makes it lessen the craziness and sleepness nights. I am on Pentasa now and Entocort, just avoiding the prednisone which is why I have a bone density test tomorrow, because the last one was in 06' and thought it was just last year...that was a mammogram not a bone density, I was told.

Have you had a colonoscopy recently? Prednisone is not nice but it works for a temporary fix until you get relief. Has Remicade ever come up?

You will have lots of help here!

 

[Nyx]

I was on Prednisone for 6 months this past June, and fortunately the only problem I had with it was insomnia. My doctor said the best way to deal with that is to take it early in the morning. It got better as the dosage was reduced, and I was relieved that it got my flare under control...a little loss of sleep was worth it. Plus, for some reason, I felt like I could move mountains when I was on it. It gave me energy, and I got my appetite back. I was also on Pentasa when I was first diagnosed in 2006, and it worked for about 2 years. I just recently had a colostomy and am currently not taking any meds (first time in 3 years...it's fantastic!). If I hadn't had the colostomy my doctor was going to put me on Remicade. I've heard good things about it, and have a friend who's on it and has been in remission for 6 years.

Sorry to hear you're having such a hard time, I hope it gets resolved for you soon.

Cindy

 

[imisspopcorn]

:welcome: Joan

I am so sorry you are feeling depressed and sick on the steroids. They really mess with me physically and emotionally too. The older I get, the worse it is each time I take them. The good news is, you are not alone! I am so glad you joined this forum. There are so many friendly and supportive people here.....Just try to rest as much as you can so you can heal. Try to avoid caffeine and high sugar foods while you are on the steroids. I always experienced extreme Jitters and roller coaster blood sugar levels while on them.

 

[Dani]

Hi Joan,

Welcome. Sorry to hear it took so long to be diangosed. I was diagnsoed with crohns after 6-8 months. I was diagnosed last August.

I was on steroids for two months, I hated them. Eventhough they made me well, they also made me fat and moody.

Speak soon x

 

[Astra]

Oh thank you to all my new friends! Aargh see, never thought about the caffeine, I hammer it all day long, no wonder I can't sleep! I tremble too, and cry for nothing! Early days yet, 2 more weeks at 8 tablets, then 7, then 6 and so on til zero is reached (mid April methinks) Can't wait now for the moon face, the buffalo neck, purple arms and blind and bald! Not! LOL
Have lots of love and support, work has been great (and still paying me) I teach autistic children and their hygiene isn't the best! so gotta stay away in case I pick a lurgie up or two!and I know these steroids are temporary, thank god! My consultant has mentioned Inflixi something? (injections?) if all else fails. By the way, having a hysterectomy was the best thing I ever done, my symptoms didn't half reduce, no regrets! xx

 

[Astra]

Hi Formally Pen
I have to eat 2 calcichews a day cos of my bone density, quite worrying isn't it? I haven't had a colonoscopy for years, I'll mention it to doc in April.
So glad to have found this site, feel better already!
Are you all American and Canadian?
I'm from Liverpool, UK
Little town called St.Helens (home of great rugby and Pilkington Glass) xx

 

[Crohn's 35]

There are alot of Americans here but lately the Canadians have been invading lol. Alot from over the pond, you will see, they will be here to greet you.

Every Crohnie should have a scope even if they are well, sometimes it can creep on you, and every 2 years is recommended. Welcome again, glad you joined us!

 

[farm]

Welcome!!

 

[Fog Ducker]

Welcome Joan!

 

[Peaches]

:welcome: Joan! Wow - a radical hysterectomy huh? Well, I am glad you are happy with that outcome otherwise - oopsies!! Many women find their symptoms do increase with their periods - so that makes sense that it would help you.

I believe you are referring to Infliximab (or Remicade). We have a Remicade Club thread here you can do a search for - it will give you lots of good information. I have been on it for over 6 years and it has been a great med for me.

Hopefully you'll get through the Prednisone taper ok - if you are having trouble sleeping, tell you doc and they can prescribe sleeping pills. No sense in going sleep deprived and crazy at the same time! I find it helped me get my entire house in order as I had wonderful amounts of energy on it.

Hope everything gets quieted down for you. Glad you have joined us!

 

[pain in the butt]

Welcome!

 

[lilninja]

Welcome!

 

[Pirate]

Welcome to the forum of Crohnies, Joan

 

[Astra]

Hiya Peaches!
Yup you're so right about the hysterectomy, everything was glued together, quite a car crash down there! Endometriosis glued together with strictures and fistulas! God can you imagine wot it must of looked like? seriously tho, symptoms of cronies did reduce.
Yeah that's it, Infliximab, my doc suggested it if Pred doesn't do the trick. And Yes! all of a sudden, today I feel well and energised and I cleaned up, vacuumed etc. feel knackered now tho! but will toss n turn all night, and it doesn't help that I have tropical moments too, sweat like a pig, cos I'm on HRT too, no ovaries ya see! God wot a pain in the crack (literally) But you know what? I nearly died last week, my bowel was gonna blow up! So now I am really positive, chillaxin, watchin rubbish on daytime TV, and lookin forward to Summer! and if I wake up tomoro lookin like a chipmunk, then so be it! My new boyf adores me and it's brought us closer. lotsa love Joan x

 

[uab grad student]

Welcome to the forum, Joan. You really have had a hard time but it sounds like you have a positive attitude which will really help you get better.

 

[Cackman888]

Welcome Joan

 

[Rob]

Gday astra

new here too
so pred stuffs up ya sleep does it
no wonder I been livin on an hour or two at nite with 10 min naps thru day here n there

hope ya better soon

 

[Astra]

Hiya Rob!
Yeah it sucks! Feel like I'm whizzin on cheap speed!! lol
Anyway today I phoned my doc, and asked if I could take Nytol Herbal tablets with Pred, he said yeah defo, it will do no harm, so gonna take 2 tonight, fingers crossed! Only went to bed at 3am last night, and no kip today, so even tho my eyes are meltin, I'm stayin awake til 10pm then hopefully sleep, no bombin about ironin and hooverin in the wee small hours like some deranged care in the community! ha ha
All the Best
Joan x

 

[crazycanuck]

Whew thats a hell of a hospital trip. Welcome to the forum though and hope you start feeling better soon!

 

[violetcreams]

Hi Formally Pen
I have to eat 2 calcichews a day cos of my bone density, quite worrying isn't it? I haven't had a colonoscopy for years, I'll mention it to doc in April.
So glad to have found this site, feel better already!
Are you all American and Canadian?
I'm from Liverpool, UK
Little town called St.Helens (home of great rugby and Pilkington Glass) xx

Hey Joan. Welcome. I know St Helens (I'm from Liverpool but I 'emigrated' to Yorkshire in 1992)! :welcome: :banana: :banana: :banana:

 

[Astra]

Hey violetcreams!
Yeah I was born in Liverpool (Bootle) but moved to Haydock in St Helens in 1970.
Loving this site, don't feel alone anymore, or isolated. Had loads runnin round my brain, now had lots of questions answered.

Lotsa luv x

 

[Astra]

Hi Rob
Hope you are feeling a little better today?
Update on my Nytol !
didn't bloody work! still awake til 2am! still feellike i'm whizzin on speed! fingers are tingly and me feet are cold! Hate these Preds!
Does any one know whether I'll blow up and end up looking like Alvin? only gonna be on em for 2 months? and if I do blow up, does the chipmunk look go pretty quickly? Don't wanna go back to work and frighten my autistic kids! lol

 

[Nyx]

You won't blow up....lol...even though you might feel like it! I found that if I took the prednisone at about 6 or 7 am I could get to sleep around midnight or so and get about 4 hours sleep. The insomnia is a killer! But I felt like I could move mountains when I was on it....

Good luck with it...and keep in mind it's only for a few months...

Cindy

 

[Astra]

Hi Nyx
Yeah gettin no sleep, it's a killer alright! I've took my Pred at 7am this morn, and even tho me eyes are meltin, gonna stay up til midnight then hopefully sleep! If not, it's not the end of the world! but bloody hell! they don't half make me energised! And I feel so well! Crohns? wot crohns? lol I have no pain, no runs, no sickly feeling, eating well and keepin it in!
Feeling really positive my bosom bowel buddies!

 

[violetcreams]

 

[Rob]

Hey astra

yea I been strugglin with sleep bad with my pred
I'm a shift worker normlly so week of days followed by week nites back too dys etc
it's a killer live on about 3-4 hrs a day tops

right now I'm in hospital on hydraquatazone an man this stuff is bad lol
i jus lay here like a zombie
almost 48 hrs now I been awake grrrrr

 

[mycrohnsstory]

Welcome

 

[Astra]

Yeah Rob
I had hydrocortisone injected straight into my hand in hospital it's a shit drug! Never slept at all, and of course it's dead noisy anyway in the wards. One night I lost it and screamed at the nurses station 'have you no respect for the dead you inconsiderate bastards! stop flirting outrageously with the junior doctors and shut the F@$* up !!! Ha Ha had to apologise profusely the next morning sayin I was deranged with sleep deprivation!
Hopin for a good kip tonight
good luck x

 

[Rob]

Hahahaha yea sounds about right too

an just as u fall asleep they wake you too check ya blood pressure etc an too see if your ok
WTF?!! Well I was ok til ya woke me lmao
they been waking me 4 times a nite ATM twice too give me the hydraquatazone an twice for observation
So I said why not do my obs - blood pressure etc when u give me the hydraquazone injections then I can get some sleep

there response - o didn't think of that

 

[shazamataz]

Welcome to the forum!

Yup the pred can make you a little crazy! I enjoyed the earler stages as although I was exhausted I was also pretty wired and motivated and got lots done. Sleep was dreadful though - about 4 hours a night if I was lucky! But I did manage to eat lots and put some of the weight back on.

I never got the chipmunk face or the buffalo hump, just the extra facial hair and my head hair didn't seem to fall out but has gone a lot straighter!

Keep an eye on things as you taper off. I got really depressed, bordering on suicidal, and had to get antidepressants

Glad to have you here

 

[Nyx]

When I was on prednisone I had so much energy, and I ate like a pig! I also got the facial hair and moon face (that was really special...NOT!!). But, it did make me feel a hell of alot better...even with the insomnia.

 

[Astra]

Hiya Shaz and Nyx!
Yeah I'm doing really well on these Preds! Feel so normal, should be back at work? NOT! Can't stop eating for the first time in years! Everyone is soooo made up, but my face is startin to moon!
Bit worryin that Shaz, about tapering off, being depressed and that, I will watch out for that.
I went out on Saturday for a family meal (first time out since hospital stay) and I ate a 3 course meal, chicken, lamb, veg, potatoes, choc waffles with toffee sauce, and drinks!
no pain, no D, so sicky feeling, no bloating, no gas, I'm sooooo pleased!
Lotsa luv

 

[Rob]

Glad that your feelin better an that you've gaineed some normalsy back too ya life

hopin things continue in the up n up for u

 

[danman]

Hiya Joan,

A quick question for ya.....

A Toffee or a Red....?:ycool:

 

[Astra]

hiya Dan the Man good to meet ya, where are you? Dublin?

How dare you!

There 's only one!

RED throo n throo !