Hi I’m Helen from London, UK. I’m 34 years old and have had UC for about 10 years now and am currently going through my worst flare up ever. However, on the plus side I’ve lost over stone in weight (About 6/7 kg’s for you non Brits), but think I would have preferred the exercise route!
Some more about me:
I love nature & wildlife and all animals. I like socialising and dabble with a bit of surfing & scuba diving when on holiday.
More frequent BM’s (dia), wrist & ankle joint pain, low energy and weakness.
I’ve been really lucky really with my ulcerative colitis for the past 9 years, only having quite a bit of wind & sometimes mucous in BMs at times but apart from that I was well. However this past year has not been so good and right now I am in the throws of the worst flare up I ever had!
Originally diagnosed with procitis, I have had colonoscopies which have shown it has spread. Apparently I have a rare presentation of UC as mine is patchy like Crohn’s, however the Doctors think it is still UC due to the biopsies & the fact that my flares tend to coincide with me quitting smoking! Although I do think my flare ups are stress related too.
The flare up I have at the moment is nasty, I’ve never felt so ill for such a long period of time in my life. It’s been about a month now and whilst I’m only going to the toilet roughly 3-5 times a day, a bit of discomfort in guts after eating, I feel so weak and low in energy. My walking is so slow, my wrists & ankles ache, everything is an effort, having a shower takes a lot of effort, walking to the bottom of the road is an effort, & if I try to do a bit of washing up I have to take rests in between. I’ve been off work now for a month and whilst I’m no longer spending days in bed I just don’t have the energy to go back to work yet and feel like this is going on forever. I’m borderline anaemic but always have been and never felt like this. I have been on the SCD diet (including the SCD yoghurt) now for a week but am finding it a bit difficult as I only eat fish (no other meats) and not sure it has done anything yet. I just wondered if anyone else had experienced such fatigue/weakness/low energy without having that many BM’s? Is this normal with UC? I’m only usually going 3 times a day (but all dia).
Asacol – 400mg x12 daily
Beclometasone Diprop (Steroid with less side effects than Pred) Dr started me on this at the beginning of this flare but it didn’t do anything for me).
Prednisolone x30mg daily (Steroid) Tried this with the steroid above when things weren’t improving but I had bad side effects from Pred in the past, which is why I was on 30mg. Although physically Pred does help my guts & improve things, emotionally I can’t handle it and came off them again after 5 days due to feeling very anxious/on edge, not sleeping & crying uncontrollably!
Prograf (Tacrolimus) Immune suppressant x2.5mg daily. My Dr started me on this a week ago I don’t think it’s commonly used with UC more for anti-organ rejection. The side effects look quite scary! It has helped a bit, I was having overall body achiness a bit like when you get the flu, this has improved but all my BM’s still dia and I still feel very weak and low in energy.
VSL#3 (Probiotics) I find this good when I have mild symptoms but I’m not sure it is doing anything at the moment.
I also take fish oils & vitamin D.
written by Helen M