Struggling to get into Remission

[butafli]

Hi Everyone,

I'm new at this but really wanted to find some support out there as I don't know anyone else who has Crohns and I'm finding it pretty hard at the moment. I was first diagnosed in 2005 shortly after having my first child. I was put on Pred and Pentasa but 5 months after this I ended up in hospital with a blockage. After I was discharged I looked like a big planet!!! All round and yuck!!!I couldn't believe what the steroids did to me but I got over that and got put on Azathioprin which I stayed on for a couple of years. I then went into remission and had two more babies. My youngest is now 10 months old and for the past two months I have been really sick. No blockage this time so far but this flare up is very different to the side pain and cramping originally had. I have had d for nearly 4 weeks and now I have such severe abdo cramping it is making it very hard to function and look after 3 littlies. I haven't eated a full meal in ages, and won't dare touch salad stuff or veges that aren't pulped. I wwon't even eat meat as I'm so scared of getting a blockage. My iron is practically zero but can't get it up either so I'm so tired (Man I feel like the worlds biggest moaner here). I have just been to the doctor and he has put me on 30 mg Pred one week then to slowly drop it. I know this next question is going to sound insanely superficial but does anyone think that this will make me put on a lot of weight? I have just worked so so hard to lose all my weight. I feel silly even worrying about it. My husband just wants me to feel better. How long does it take to get into remission again after a flare up like this and can anyone tell me how to relieve the cramping? I think it could be from narrowing due to inflammation after a month from hell. When will this end??!!!

 

[Nica]

Hi,
So sorry you are feeling so badly. On prednisone everyone gains weight differently. I can't say for sure if you will or wont gain weight, but you are going on a quick taper (by what I have been on in the past). Have you tried ensure to help get your calorie and vitamin intake up? Have they tested your b12 levels? Many people with crohn's have b12 issues if you have disease in your small bowel. Have you told your G.I doc about the pain? they can prescribe muscle relaxers for the bowels, that will help with cramping. If you have severe D, they can also prescribe lomotil. Something to help you feel a bit better may be to do a clear liquid diet for a few days to give your guts some time to heal.

Flares can last as quick as a few days or quite a long time. Make sure you stay in contact with your G.I. as long as the symptoms are bad. If in doubt, go to the ER sometimes IV fluids will go a long ways to making you feel better.

I have never had a blockage just strictures so I can't comment on that part of it.

 

[carrollco]

I'm new at this, but I hear your pain. I will keep you in my thoughts and prayers.

Louann

 

[crazycanuck]

Hey there and really sorry for the flare again. But unfortumately everybody is very different. Ive had a flare of just a week or my latest one of nearly 8 months although that was due to 2 major stress events.

 

[archie]

hopefully the pred will get you into remission, I was put on 30mgs in July for 2 weeks then tapered off them and took my last one on saturday. I gained about 1/2 stone and no moon face, I walked everyday, drank loads of water and didn't take salt to try and beat the water retention which seemed to work but I did scoff a lot of chocolate due to the increased appetite but you might have better will power than me!!! I know it's a rotten drug but it can do the trick. Good luck

 

[butafli]

Thanks

Thanks guys for the replies. It is so nice to know you're out there and we are all going through similar things. Now I've got a whole load of people I can get advice from. It's great!!

 

[fateful_one]

Hey Butafli

Hi Butafli - Sorry your having to go through misery right now

Are you on Remicade? It is expensive, but so worth it! hot bathes r great for the cramping. There is medicine for it, pain and D, and your doctor should be able to prescribe some. If he/she isn't willing to help you, maybe it's time to see someone else...

For me personally, my flares have last anywhere from 2 weeks to a 8 months, but no one is the same, so your case may be very different. The first year I was on remicade, pred and a dozen other pills. I gained 50lbs in 45 days and my face was a giant round ball in no time Now a-days I can't take pred, otherwise risk a psychotic break - no joke!

Oh, and I know many people will disagree with this, but my doc says Pred is totally useless. All it does is cover up the chronic inflamation and cause horrible side effects.

Hope u feel better soon and hang in there

 

[Astra]

Hi butafli
and welcome

I'm one of them who will disagree, Pred saved my life! Pred is given for all sorts of inflammation including asthma and pleurisy.
I was blocked and it became infected, my CRP was 261 and I was told I nearly died!
Anyway, I took Pred then Entocort for 11 months this year, Pred healed me nicely. I started on 60mg and only tapered by 10mg every month til zero. I believe the route to success is to stay on high doses until the Pred has had time to work it's magic.
I went to gastro last week, I'm now in remission, peeps on here know it's been a rough year, and I now feel much better, I have no symptoms
I piled on weight, got a moon face etc, but it's a small price to pay to be free from pain!
Listen to your husband, he justs wants you well, my new motto?
Pred or Dead?
lotsa luv
Joan xxx