How are you all feeling these days?

I havent been on in a while, things started to calm down for me for a bit (yay!), but then it all took a turn for the worse......... I started getting really really bad stomach cramps again, worse than they had ever been and ended up in hospital. My stomach was swollen, had a rash on it and was very tender to the touch. I had a high temperature, low blood pressure, night sweats, hallucinations, going to the toilet constantly was an absolute nightmare!

After a few days in hospital over the weekend, I saw my consultant and he arranged for me to have a colonoscopy the next day. That was the worse experience of my life. The enema beforehand was bad enough, but when I got into the theatre and that man tried to stick the camera in, I completely freaked out crying, screaming etc it was just horrible. Its fair to say they never managed to complete the colonoscopy, only got 15cm in, but managed to take a biopsy, so I have to go back to hospital on 12th May to talk about that.

Finally got out and now I am on a cocktail of 31 tabs a day, prednisolone, pentasta, buscopan, folic acid, vitamin b12 and paracetamol. I only have another 8 weeks on the pred, which is worrying me because it seems to be the only thing thats working. I take the 40mg first thing in the morning, and am fine right up until about 8 oclock at night when the cramps start again, and not long after I am stuck on the pan all through the night.  Luckily enough I am off work for another week, so hopefully it might calm down a bit before then.  I am now on a dairy, wheat and gluten free diet as well, so its fair to say everything has changed.

Oh what a terrible disease this is to have Im trying to keep my chin up now, and work through it since its never going to be normal again, but god its hard.  Just gotta remember that there people worse off I suppose

Wow Kellyx, things have been bad for you, lets hope the Pred will settle it down and you will feel a bit more human soon.  I agree this disease stinks and it is so hard for someone who doesn't have it to understand how it feels.  there are a lot of people out there who are worse, with this disease and other rotten conditions but hey sometimes you just have to feel sorry for number 1 for a bit.  sending you hugs and get well vibes xx

Hi Linney! Thanks for the hugs and get well vibes the pred does help it through the day but unfortunately, around this time of night it seems to wear off and the cramps start again so now its time for a hot beanie and bed, and hope to god I get a decent enough sleep before I can wake up about 6am and take some more!

I guess we all have bad times, but we just gotta get through it the best we can.

Night all