Have had this for 26 years now and have never let it beat me – I’ve had to change my life around to fit in with the condition and not let the condition beat me. I’m 41 now – first symptoms at 15. Developed anal fissure – needed sphyterectomy – then the numerous bathroom visits started – had tests – told I had IBS – given immodium. All under control until age 23 when bleeding started again and numerous trips to the bathroom (15+) per day. Would pass vile green glue like mucous and blood. Saw consultant who was very unsympathetic and told me I had a rectal ulcer. Mild inflammation found in biopsy result never told I had colitis, however. Had 3 years off work as couldn’t leave the house and felt drained all the time. Even went to St Marks and they treated me with bio feedback. I have only recently been told that I have an IBD and they are deciding whether it may be Crohn’s or Colitis and I am confused about it all but what I do have is here and it’s real.
Some more about me:
I am very stubborn. I don’t let anything beat me. I am a singer and now go out at weekends singing in clubs and pubs. I grew up in Essex and am of Jewish Italian decent although I wasn’t brought up as Jewish. When I had no choice but to take time off from work, I decided to do a course in accountancy and book keeping so that I would be able to work more from home. I was able to gain a few clients and come off benefits and gain back some self worth. I find that people don’t understand (even close family members) and think you are lazy or skiving.
Visiting bathroom 10 – 20 times a day with urgency, mucous and sometimes blood. Abdomen pain, Pain in the right eye, left knee and very very tired. Also mouth ulcers.
It Won’t Beat Me
I don’t know if I’ve ever truly been out of a flare but I may also have IBS so I’m not sure. For 18 months now (when I am not on prednisone) I have been getting mouth ulcers and a terrible pain in my eye and an urgency to get to the bathroom with undigested food or mucous with occasional blood and visiting the bathroom at least 10 and up to 20 times a day. I am very very tired all the time and don’t have much energy at all.
I had a gastroscopy and the guy said that it looked like I had Crohn’s but the biopsies didn’t show anything. He told me I had severe gastritis and gave me lanzaprazole. I had a colonoscopy which showed clear. I was given pred foam enemas and I improved slightly but only slightly.
I decided to self medicate and buy myself some prednisone from Spain and I improved within a week. I told the consultant and he was miffed. I continued for a month and I was perfect – result. The consultant took me off them and I went down hill. This pattern has been repeated 6 times now until November 2012 when I had another colonoscopy which looked clear but the biopsies showed mild inflammation. I have been put on Mezavant. I have been relatively fine for 4 weeks now (been on mezavant for 11 weeks)
Last week, I had ulcers on my tongue and felt tired. That night I had severe night sweats and the next day was spent in the bathroom, and the next and so on. Have now been given pred foam too.
Doctor says this sounds like Crohn’s to him but that he is treating me for colitis as he can’t see the evidence of Crohns even though it sounds like Crohn’s as he says the pain in the eye, the knee, the ulcers on the tongue isn’t ususal for Colitis but can be for Crohn’s!
He says that because I respond to Colitis medication and to steroids then it must be an IBD even though he can’t see it and the stool test and biopsy shows mild inflammation.
I am much better today as I have only been tot the bathroom 5 times but I still feel a bit tired and the pain behind the eye is still there.
Does this sound like an IBD? I am holding out hope that it is still IBS.
If this is mild, I would hate to have severe inflammation.
Thanks, your site has helped me.
Mezavant, pred foam enemas
Prednisone has worked the best for me but I know I cant take that forever.
written by Sharon
submitted in the colitis venting area