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Feeling overwhelmed and scared

mamagus

mamagus

Hi everyone. I got my original diagnosis in 2008 - but didn't realize how serious this disease is and really mickey moused my medication and treatment. Went off all meds in 2011, figuring my doc just wanted monies from insurance company - i felt fine, was convinced i was misdiagnosed.

12/4/12 - ended up in hospital - small intestine swelled up - spent four days in the hospital. have been on prednisone ever since - went to new doc - who did another colonoscopy - and viola - i'm now in the Severe crohn's category - remicade starts next month.

I'm scared, sad... I don't feel good still- :sign0085:
I'm not in the bathroom sick all the time - it's cramps (bad bad cramps) and soreness pain towards upper ribs.

does anyone have any success on remicade? does it hurt? could you share some experience/hope with me?
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum.

I am sorry to hear about the struggle you have had with this :( What dosage of the Pred are you on and how long have you been on this? I myself have previously been on the Remicade and it did a really good job at settling the tum, it caused an issue elsewhere which was a real shame but I know of others here that it has been a successful treatment for for a good while. We do have a sub forum for this that you may like to check out to get some info about this: http://www.crohnsforum.com/forumdisplay.php?f=58. I myself found the infusions didn't hurt and I was always given a nice comfy chair to sit and lunch was always provided by the hospital - I am not sure how things work 'over there' though with this. Have you been advised on any type of diet to follow to help ease your symptoms at all?

AB
xx
 
mamagus

mamagus

i was on 40 mg of prednisone for a month - i'm weaning - down to 5 now for another week and i'll be off (halleluja!)
congratulations on pregnancy! :)
 
mamagus

mamagus

a little worse -but only because i dropped from 40 to 20, instead of 35, 30, 25 then 20. so some stomach pains. I'm a terrible patient - because I don't WANT this, so I am in denial - thinking if I pretend it doesn't hurt, i'll either sleep my way through it or it'll go away - good lord, NO ONE should have to have this horrible disease.

I am not a bad person - why me? my God. I'm devastated by this. It's bad enough I was going 3 - 7 times in the morning and another 4 - or so in the afternoon - but now my TI is messed up - and if i don't fixx it (and theres no fix!... just praying the medication can put me in remission) because my other options are surgery or bag? are you kidding ? why would God be so cruel.

sorry - i'm scared. I'm sad, I'm angry. and it's a disgusting disease.

no - no worsening in the symptoms - i haven't had the nasty D in months. in December i had non stop bile vomiting so bad i ended up in the emergency room an hospitalized for 4 ddays - and have been on pred ever since. I was pretty shocked - because I thought I WAS in remission - i thought a flare up was diarhea - had no idea it could be a massively inflamed small intestine so bad you are hospitalized. Shoot - how do you exercise care and caution for something you don't even know needs it?
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
This can be hard to live with at times but it is possible for things to fully settle down. I have had moments when I thought nothing was going to work and I was never going to have kids and I was a burden go my husband, now I am stronger for what I have experienced and am expecting to meet my little one in a few weeks. Hang in there hun and I will certainly be keeping fingers crossed for you. Are you perhaps able to get in contact with your doc about perhaps upping the pred again for a short while and then tapering down again at a slower rate? Do you notice whether specific foods aggrivates things?
 
mamagus

mamagus

so happy for you for your pregnancy - do you know what you're having? i have two kids - i'm telling you - don't blink - enjoy EVERY precious minute - they grow up so fast.
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
I am having a little boy which is what I was really hoping for. Due to the crohn's I had an extra scan at 30wks and will have another at 34wks, currently things show he is a good weight, in fact the little piglet is slightly above the average weight for this stage.

Please keep me updated on how you are doing.
 
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