Crohn's or Colitis Support

[Anaffaquine]

Sorry if there is already a thread on this but I couldn't find one.
I was diagnosed in Feb after sudden and significant weight loss (3st), constant toilet trips, loss of appetite and lots of pain. After a scope found ulcers in lots of different patches of my large intestines, I was diagnosed as having Crohns.
I was given IV steroids then onto prednisolone reducing each week from 8 tablets to none. I was also put on Pentasa as my liver function wasn't great so they decided against azathiaprine.
I've since had an MRI which confirmed there were other areas further up that were affected too -hence the pain.
The steroids did the trick and I was symptom free. However, I piled back on all the weight Iost, was moody and sprouting hair in places that had never had hair before.
After a couple of weeks off the steroids, the symptoms started creeping back. The pain and toilet trips. Not any weight loss unfortunately as I'm as big as ever.
The doctor has put me back on 8 steroids, reducing again. I am certain I will put on tonnes of weight. I know that my health is more important than my appearance but considering I've put on 2st in about 2 months I'm slightly concerned I will put on another couple of stone and will be as wide as I am tall.
I just want to get back to normal and I'm very sad I'm not the mum I used to be to my little girls because I have no energy.
Tell me it will be better soon.

I'm assuming you are under Consultant care? If steroids and pentasa are not holding it, ask what the policy is on prescribing Infliximab. It's been a wonder-drug for me. It's given as an infusion taking an hour every 8 weeks usually (after some pre-loading doses).

Crohns and Colitis UK is very useful and there are some helpful forums on Fb, although I tend to find they are a bit 'woe is me' which isn't really my style.

If you think you need the loo urgently whilst out and about, you can get a RADAR key which opens disabled toilets for a few pounds.

There are quite a few of us on here with Crohns or colitis, so don't be afraid to pm me or one of the others if you need advice.

Yes, under consultant care and have direct phone numbers for nurses at the clinic too. My gp has also been excellent.
I suppose they don't know what I'm going to be like. I just hope they get the mix of meds right soon and I get off the steroids sharpish.
I went on a Facebook page that was recommended but as you say, it was pretty depressing and not my style.
I can't quite get my head round the disease because it seems pretty complicated. Thanks for replying.

Hello Ana I am also a fairly newly diagnosed Crohns mum.

I have spent six months on steriods and am intolerant to Pentasa and Azathioprine. The weight and body hair issues are not nice side affects, my hair has also started falling out.

I started adalimumab last week and so far am feeling worse and also now have an awful cold. I am really hopeful that this treatment will help me soon.

Gobbin its really good to hear that there is hope and that we can feel beter.

Totally understand the constant pain, lack of sleep and just feeling generally unwell and worn out.

A support thread is a great idea, I have joined the Crohns website but have avoided otber forums.

Very sorry that you are also suffering xxx

Hi Ana sorry you're back to feeling crap after the steroids. Have your doctors discussed alternatives to the Azathioprine? There are some biological therapies available - Infliximab & Humira being the most well known. Not sure if you can have them if you have impaired liver function, you would have to ask your consultant/ IBD nurse. The leaflets on the NACC website are really helpful & I know there's one on different meds as my IBD nurse actually gives them out. I'm also on the Crohns & Colitis forum on Facebook - its a closed group so you can talk about anything you like without it appearing on your friends newsfeeds. I found the support on there fantastic before, during & after my surgery.

It does take a while to get the meds right & unfortunately everyone is different so there is no 'one size fits all' approach to IBD. I'd advise anyone to talk to their IBD nurse - mine are fantastic & are often more knowledgeable about the meds on offer than the consultants. Take care & I hope you feel better soon

Still haven't seen the consultant again yet. I'm waiting for an appointment. I'm a week into my 8 weeks reducing steroids. If anything, the flare symptoms are a bit worse. Pretty sure the stress of my impending battle over my return/non-return to work isn't helping. I had left a lot of that to my union but it is at the point that I need to get involved now.
I really would like a rest but with two little ones that isn't going to happen.
I've piled on all the weight I had lost and a bit more too. Keep telling myself to get a grip and stop being so miserable but the steroids are messing with my head! Argh!
Just want to get back to normal.