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Newly Diagnosed and Confused

Diana colitis australiaMeet Diana:

I am 33 years old. I was diagnosed with pan colitis a couple of months ago which came as a big shock! I am still trying to adjust to this condition. Having a sense of humor and being partial to toilet jokes definitely helps.

Some more about me:

I live in Australia and I work as a researcher and love science. My hobbies include reading, reading and more reading as well as yoga. I do more reading now and less yoga, but hope to get back into it when things settle down.

Current Colitis Symptoms:

Abdominal pain (especially lower right abdomen), lack of energy. The medication is so far keeping other symptoms away.

My Colitis:

Hi There!

I am so glad I found this site – Adam you are a life saver! The life stories shared here have helped me so much already. And now, I am finally strong enough to vent! Apologies for the long post….

Unlike many people whose stories I have read on this site I have always suffered with constipation – and been admitted to hospital a couple of times because of it. This year new symptoms emerged – pain, urgency, having to run to the bathroom lots of times with what I thought was a stomach upset, then passing nothing more then blood. My worst flare up happened in July this year. I was supposed to be enjoying time off in Europe but spent most of two weeks looking for the nearest loo! I was passing lots of blood (and nothing else!), fatigued and extremely worried. And, the worst part for me was that my bum felt like it was on fire! I couldn’t sit down. I hope some of you out there can relate to this. Needless to say, my husband and I did not get to do a lot of sightseeing!

My symptoms continued when I got back home, and I lost a lot of weight. My doctor ordered a colonoscopy, and I got the diagnosis of pan colitis. Whilst still reeling from this, I was told to take prednisolone and mesalamine, but (knowing something about prednisolone side effects) refused the steroids, and have been taking mesalamine in various forms for the last two months. I am not sure if I made the right decision, as I was in shock at the time, and felt I wasn’t being taken seriously by the doctor. I have switched doctors since, and my new doctor does not want to try prednisolone yet.

The drugs worked brilliantly and my bum breathed a sigh of relief (!) almost immediately – the pain went away, and I felt normal. It did not stay that way, and I have had several episodes of constipation accompanied by pain in the lower right abdomen, but no urgency and no blood. I have completely modified my diet, and eliminated dairy as well as most sugars and processed foods. I still need to take some red meat due to low ferritin levels, but have cut down. I have celiac disease, so I don’t eat gluten. I take Aloe Vera Juice and a probiotic (40 billion). I take vitamin D as I was told I am low. I have cold pressed vegetable juices every day.

I had a repeat colonoscopy a couple of days ago, and was told that the inflammation looks better but is still affecting my entire colon, and I am waiting on biopsy results. And now (maybe because of the scope?) the pain in my bum has returned. I am also getting mouth ulcers, as well as ulcers on my hands. So I am a bit down, and uncertain if this means that I will have a flare up. I feel like I am doing everything right, yet I can’t get on top of things (or to the bottom of things!), and I can’t seem to gain any weight. I am scared of being told to take Prednisolone or something worse.

I am so new to this, and have lots of questions.

I’d appreciate any advice you could give this newly diagnosed UCer.

Thanks heaps!

Colitis Medications:

I take 2x 1g mesalamine suppositories, 1x4g mesalamine enema (what fun!), and 4g Pentasa granules.

I also take:

written by Diana

submitted in the colitis venting area



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