Hi everyone new member here!

Hi everyone I'd like to introduce myself.

I'm 34 years old and was diagnosed with Crohn's disease in July 2002 after a two and a half week stay in the hospital. I'm just out of hospital 3 weeks ago as I had a really bad flare up which seemed to just appear from nowhere! This time I seem a lot worse than I was the last time and have been put onto the Nestle Modulen diet so all I am allowed to "eat/drink" are the shakes.. The shakes aren't too bad and I'm more than half way there, been taking them just over 4 weeks now, but I am finding it a lot harder now and I really wish I could have some food.

I've been off my work for 6 weeks now and I'm planning to go back on Monday which I'm a bit nervous about as I've not been feeling too good the last couple of days but I'll just need to see how it goes. I don't seem to know when I'm really sick as I was really surprised when I was admitted to hospital this time, I was sure they were going to send me home the next day and tell me I would be OK at home and I ended up in for 16 nights so I find it really difficult to know when to go to the doctor and that worries me as I'm probably doing a lot of damage by not recognising I'm sick.

I look forward to using this webiste for support as I'm finding this flare quite difficult to deal with.

Thanks mdf34 I'm hoping this site willl be a lot of support for me over the coming years

Hi vonnier. A sad welcome indeed. Sorry to hear about yr problems. I've never been in hospital for more than a week. It's good to know they take CD seriously in some places. My advice is go back to work, but only if you feel you can cope. I remember dealing with a lot of pain at work, but right now I just can't be bothered. Been signed off for over 3 months and am having a surgery soon, which essentially means another 2 months off...if I'm lucky

Take care

Hi Vonnier and welcome to Healingwell. I am a big proponent of taking meds at all times. I learned the hard way what no meds and having Crohns can mean, and am never without meds. I think you should give the 6mp a try. It may help to keep you from having these unexpected flares. Nice to meet you and look forward to hearing more from you. Hugs~

Hi Vonnier. Yes, it is terrifying amazing how this disease can flare up so suddenly and just reduce you to a cinder in no time at all! Happened with my husband too. It sounds to me like perhaps you need a maintenance med stronger than pentasa to make the flares less drastic if possible. Pentasa is like topical asprin for the digestive tract - it doesn't do anything to stop your body from attacking though. The pred is doing that right now, and the liquid diet is making it easier for your body to process food. I've heard that a completely liquid diet, can propel you into remission as well. So, between the pred, and the liquid diet, I think it's starting to get you into remission.

If I were you, even if pred and model seem to be doing the trick, I'd still want to get on a stronger maintenance med, so that you can control these flare ups better. Some people do just fine with pentasa or asacol/lialda, but for others, it seems to go from being fine one day to being deathly ill the next. My husband falls into that second category - fine one day and deathly ill the next. I think it's hard to recover from a flare like that - and you end up on high doses of steroids which do a lot of damage to your body - my husband has osteopenia from the 10 months of high dose steroids he was on. I firmly believe it is better to take the stronger meds and try to exert control over this disease (and hopefully minimize the number of flares and the severity of the flares), then to be reactive and just try to deal with flare ups as and when they happen.

On the work front, can you work from home? My husband, even when he was really sick, could work from home at least part time. It really helped him keep his mind off his illness, and kept him from being on disability. And it also gave him the flexibility to go take a nap if he was tired. Of course that depends on the type of work you have to do; but if this is a possibility at all, I highly recommend working something out with your boss.

Hope you get to remission soon. And do think about getting on some stronger meds (immune suppressants) to keep your flares to a minimum, and their severity low. (((Hugs))).

PV

PV thanks for the response it’s so nice to hear from other people I really wish I’d joined this site a long time ago. I know Pentasa isn’t that great at getting you into remission and I’m hoping that the pred & the liquid diet do that as I would like to start a family soon which is why they are trying to keep me off the other meds at the moment but we just need to see how that goes. If it doesn’t go into remission then they’ll have to give me something a bit stronger.

It’s really hard to recover from a flare like that as I feel so much weaker this time than I did when I was DX in 2002. This one seems to have knocked the stuffing out of me and my body just doesn’t seem to be healing quite as quickly as it did the last time either or maybe I just can’t remember how bad I actually was 8 years ago.

It was my first day back today and I made it through to one o’clock and then came home for the day and I’ve had a sleep for an hour as I was really tired, it takes a lot of you getting up and going to work and I didn’t realise how hard it would be to walk from the car park to the train station. It was a 6 minute walk and I felt deathly by the time I got there. Planning on taking it really easy this week at work and my boss is in agreement with that so that’s a big plus, hopefully my stamina will be build up in no time at all.

(((hugs))) to you and your hubby hope he's well

Welcome to the site you'll find lots of love and support here!