Feeling down

Digestive health
1

Hi, feeling down at the mo, thought I might be going into remission of proctitis BUT alas dispite having a few reasonale days with fewer bloody days yesterday was not good, it's been almost 4 months now of bleeding, cons at hosp keeping me on rectal pred 5mg am/pm BUT does anyone know how long it can take to stop bleeding and go into remission?  Feeling very alone and sad that this disease is slowly taking my joy of life away. RJ

2

Hi RJ

I can absolutely sympathise with your situation. I have the same condition and I had a flare up from March last year until a couple of weeks ago with a brief respite for about a month last October. The only difference for me is that I went sick from work in January and have been on prednisolone suppositories since then. The consultant thought work stress could be exacerbating the condition. It seems she might be right. Now I'm worried that if I go back to work it will all flare up again. It just feels like there's no end in sight when you're going through it. Have you got anyone you can contact to let them know the meds aren't working? I'm due to start remicade soon as a maintenance therapy, so there are other options available It's just getting access to the Dr's to get them to do something for you.

I'd be interested to know whether you can make a connection between your flare ups and stress, and if you do can you reduce the stress in your life to give your body a chance to heal?

Good luck and I hope things improve soon x

3

Hi Louise

I am sure it is some form of stress, but after seeing the cons the other week I and he thought I might be going into remission, BUT he did say it hasn't been long on meds! So guess in another week I'll ask my ibd nurse to see where we go, he took tons of bloods and talked about immuno drugs but not suppresants!  The bloods needing sending away as once on the drugs high risk of catching all sorts mumps, rubella, chick pox etc etc etc.

Thanks for the reply and wish you get well soon, and it is good when your not alone  I even put myself on strict bed rest for a month to see if helps  Hope you get sorted soon RJ x

4

So sorry to hear how down you are at the moment.i was bleeding like that for long time but it will stop as soon as you are on the right meds .are you seeing your team soon.keep your chin up it does get better .

5

Hi Barbara thxs for this I am in touch with my ibd nurse via e-mail and keep her updated now and again, but in another week if no significant improvement will ask what next  Just gets ya down a lot

6

Yes I was going to the loo about 12 times a night .i sat up one night all night as it was easier to keep going from sitting up than lying down .yesterday he put me on axatheoprine so fingers crossed it will get me right.i also do enamas wich is a pain also .keep your chin up !!!

7

Hi RJ

I was very sceptical when I was put back on the prednisolone as they didn't work for me last time I was on them. But this time I started taking them with bile salts which are supposed to slow the amount of visits to the loo you need to make. They had the desired effect I guess coz I ended up constipated! Not pleasant at all but I think it kick started my body to respond to the steroids. I did stop taking the bile salts after that but the prednisolone was able to do its stuff. It took about 6 weeks to get a remission from them so perhaps you might need to stick with it for a bit longer. It's frustrating when other people say they have a remission immediately, I know! Hopefully you'll get a positive response soon.

All the best

Louise

8

Hi there,

Really sorry to hear you are suffering like this. Given your description to me your dose of Prednisolone seems very low, at 10 - 12 trips to the toilet at night I was on a minimum of 40mgs orally, suppositories were useless to me. Couldn't keep them in for one thing, likewise enemas. I often had to be very strong with the Doctors and say "no, that won't work, give me 40mgs of pred". 

9

Isn't it odd it's always at night when we suffer .why can't it be in the day then we can get enough sleep to cope with it ??

10

Thxs Barbara hope yours improves soon and hugs back bless ya x

11

Hi Chris Barb was 10-12 trips plus for me my pred is increasing HR up to 117! so think they reduced it, plus super sensative to drugs as I also have fibro too

12

Wish I could barnara but got fibro so sleep already an issue lol but agree x

13

Hi Louise bile salts will mention this next week too, but yep folk who go into remission quick are very fortunate and yep will stick it out a wee longer hating bed rest but it has helped but a month now it's like cabin fever lol hugs xx