Hi I’m Gill, I am a 45 year old mother of 4. I work part time from home (luckily) doing my husband’s books and was diagnosed with UC just before Christmas 2011.
My Colitis Symptoms:
Several weeks later, there was no change whatsoever in my condition and it was made worse by severe abdominal cramps – mainly evening, really bad lower back pain (I do suffer with this anyway, but this is mega!) and stiffness and pain in my hands and thumbs. Along with this I had also developed a rather strange patch of skin on the palm of my right hand which itches beyond belief, and gets flaky and cracked. I was referred to the GI Specialist nurse, who decided to put me back on Asacol, plus prescribed pentasa suppositories and enemas. This had nil effect so the enemas were changed to steroid enemas … nil effect so finally given prednisolone for 5 weeks plus continue on the other meds.
After about 10 days, the steroids kicked in and symptoms stopped! What a relief! Even my hand got better! You have no idea what it’s like trying to go to the toilet 15 times a day with a 2 year old – who often tries to push you off so she can go as well! Also she won’t stay in there with me – well who would! So will wander off and get upto all sorts of mischief. Luckily the 3 older ones (10,12 and 14) are great, but once they’ve gone to school it can be awful. During this time, I also got referred to a dietician who recommended low fibre, no lactose and no alcohol (low fibre not that easy for a vegetarian).
Sadly, on the weaning off in the last week, I started bleeding again, my hand started flaking and my joint and back pain slowly increased. Today, I’m back to square 1. Bleeding with every movement, BM about 10+ a day, severe abdominal pain and lower back pain and a scabby hand. Trying to lose the 10lbs I put on with the steroids! The diet is not really helping, although sadly alcohol does seem to make the wind and tummy pain worse in the evening!
Not sure really where to turn from here. SCD is just too chickeny for me at the moment – even the smell of chicken soup (which I cook for my husband) makes me nauseous. I’ve been trying other meats to see if I could eat it again (it’s been 28 years) but I really don’t like anything about it. I’ve put a call in to my nurse (who’s on holiday) and guess it’ll be steroids again – which made me feel quite sad and very hungry!
Basically I think I am in just a permanent flare. I’ve only had 3 weeks reprieve during the steroids, then it was back to the beginning. Asacol seems to have no effect whatsoever, neither did the enemas which I really didn’t enjoy! Also along with all this I have also been taking probiotics – although only Boots own and Omega 3 fish oils. I did start taking Aloe Vera as it was recommended by a friend with Crohn’s, but then read that it is a mucosa and no good for UC!
Has anyone else been in this permanent flare?
I’m just glad I’m in the UK after reading all you USA sufferers having to pay $500 a month for Asacol. Thank heavens for the NHS!
Also, does anyone else have bad skin patches? or is this just something else – querying psoriasis at the moment.
Also again! Have any of you girls found that HRT interferes or makes it worse? I was diagnosed with early menopause around the same time and have just stopped my HRT to see if the UC improves.
1 x probiotic
1 x Omega 3 Fish OilDon’t think any of them are doing any good at all!