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.
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.
- How can I put some weight on?! Nothing seems to work!
- Does anyone else have constipation instead of diarrhea as a symptom of their colitis and how do you deal with it?
- Does anyone else have lower right abdominal pain?
- How about mouth ulcers and ulcers on your fingers?
- How long does it take for the inflammation to go away?
- I am kind of disappointed that the colonoscopy still showed inflammation. But maybe it is too early to expect it to be clean?
I’d appreciate any advice you could give this newly diagnosed UCer.
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