Diagnosed 2009, via colonoscopy, really scary time thought I had cancer. Symptoms started with thousands of tiny sores on insides of my hands and fingers, found out these were ulcers.
My mouth was full of ulcers and I couldn’t stop going to the toilet, not the best when your a swim teacher in a full wetsuit.
I am currently acutely unwell and experiencing symptoms I’ve not previously had, prior to this I felt I was finally moving towards remission, going from up to 20 times a day to 5. I had been in the last flare for about tree month’s. I tend to fluctuate in and out of flares constantly.
Very Sick Colon Seeks UC Guru’s
I was diagnosed with uc in 2009 after a colonoscopy, not my most favorite experience but it still beats the dentist. (Apologies to all dentists reading).
My specialist told me it was most likely not a coincidence that I had just given up smoking and was now being diagnosed.
I started off on foam enemas, which my partner and I quickly renamed butt mousse, this didn’t last long as they made me nauseous and I reacted to something in them. I moved on to some tiny grains you drink they come in a packet that look like sugar sachets, apologies for not remembering the name, these also made me nauseous and didn’t work. Lastly I was given a script I never filled for prednisone, as I was lucky enough to find Adam’s site.
As I write to you now I have just been released from the hospital after four days, with raging temperatures, and horrific pain in my upper abdomen, other symptoms chest pain, feeling of being full and uncomfortable on the right side upper abdo. And this is where it gets graphic so if your eating you might wanna come back later, green runny watery fluid, then sometimes what looks like coffee grounds but is just alot of blood, for stools.
I Am really seeking some guidance and wisdom from you guys around the following things,
Due to the fact that although I was tested for inflammation markers only slightly up, blood cultures done twice nothing found, CT scan nothing, and a ultrasound nothing found, have any of you experienced something similar and the Drs tell you your a mystery?
Could this be C-Diff ? Perhaps some of you might think it isn’t even related. I would be really keen to hear from you all about this. Thanks for taking the time to read.
Current Medications / Supplements:
Currently I don’t take anything to treat my UC, and I think that has been a bit stupid to be honest. Whilst in hospital I did one of those begging for mercy from any god, pixie, fairy, totem, saint, that I would start looking at my diet.
I tried acupuncture for a year with varying results. I also tend to find probiotics seem to make me worse. Glutamine didn’t seem to help either.
In saying that I have really tried to ignore the fact I have this disease until it slams me all over again, and I make a bunch of promises to treat my body better, so I probably get in a bit of a habit for a few weeks then think it isn’t working and stop.
written by Jay in Australia
submitted in the colitis venting area
My name is Jay, I live in Newcastle Australia. I am 35 and have two kids both girls, and a beautiful supportive partner of 12 years. I live right on the coast here so anything to do with the beach is all time, I particularly love to body surf and dive off local reefs.