Ok here goes, I’m a 31year old women living in Perth Western Australia. I am married with 1 child. I have pretty much lived a fairly active lifestlye, Always played sport as a child and continued to do so as an adult. I was diagnosed in October 2011 with UC but prior to that had never really been a sickly person. Very rarely even getting a cold in winter!
My symptoms at the moment are, frequent bathroom visits, blood, sores on my arms and mouth, abdominal pain on my right below my hip and also closer to the middle on the left. Recently had a couple of fainting episodes but really not sure if that’s related in any way.
Ok, so in October of 2011 I started to need the bathroom more times than normal. Just to over-share a bit I’d say prior to this my normal would have been once every 2 days (just how I’d always been). so this went on for about 6 weeks before I really thought I should see my Dr. We were traveling to Bali in December and I wanted to have it sorted out before we went. So my GP rans heaps of tests, blood and stool (spanning over about 3 weeks) and everything came back normal except the blood test about having high levels of inflammation. He had talked about IBD briefly before this but after this result referred me to a specialist.
So off we went to Bali and I thought I’s sort out the specialist when I returned. After returning things got dramatically worse. I was using the toilet about 15 to 20 times per day and the pain was unbearable. I went back to my GP and he sent me straight to emergency. Short story to that is they did nothing, I literally mean nothing and sent me home to wait for a colonoscopy. They had said this would be about 3 months away.
My mum had some contacts with doctors so got me in to have the scope done on the Monday of the following week. The next day i was worse and was doubled over in pain and could do nothing but sit on the toilet crying. My mum took me to a different hospital’s emergency (where she used to work) and they ran some further tests. I was treated for a bladder infection and re-hydrated and sent home again as they recommended a scope which I was due to have within 3 days.
So Monday came and I had the scope and the surgeon told me directly after I had Pancolitis. ok I said…….. Left the hospital and immediately googled to find out what that was. The Dr saw my mum at work the next day and gave her a script for Pred which she filled and I began taking them. so at this point I was taking the Pred and some antibiotics for the bladder infection. My GP then called me and told me to come in to see him and informed me I had picked up Salmonella. Through further testing it was discovered I had got it in Bali. I had to change the antibiotics and stop the pred as that was suppressing my immune system and making things worse???? anyway so i finished my course of Antibiotics and was feeling much better, back to 6 toilet visits a day so went for another stool test to check it had gone. The test was still positive so this time my GP didn’t treat it and decided to let it run its course. Ok so we are about at the end of January now and things are still pretty good. Not much pain or anything and still only “going” 6 times a day.
In march things got really bad again and I had a lot of blood and the frequency got back up to about 10 times a day. The surgeon who did the scope saw me again and referred me to a specialist.
I saw my new Dr at the end of May and she was convinced I did have UC. She said I was tolerating things really well and because of that she wanted to take things as slow as possible instead of rushing into various meds etc. so she started me on Sulfasalazine (6 per day) and asked me to come back a month later. I had more stool tests and blood tests done. During this time I started taking a probiotic and a multivitamin every day as well. So after a month I went back and my tests were all normal and things were looking pretty good. I wasn’t really having any symptoms besides the amount of times I was going, which was down to about 3-4 per day. At this stage my Dr ordered a follow up colonoscopy and I just had that done on the 20th July. directly after that scope she told me she could see no inflammation at all and that her diagnosis was that i was incorrectly diagnosed to begin with. She has said that she thinks the inflammation i had in Dec was due to the Salmonella infection (which is totally possible) and that what is going on now is irritable bowel that is slowly going away. So firstly I hope more than anything she is right but how do you explain the symptoms from before I had the salmonella. I was tested before I went to Bali and i didn’t have it yet i was already sick. Then looking back I also had sores all over my arms, this was prior to October and I thought they were Chicken Pox although they are coming back again.
After my colonoscopy I did something really stupid and stopped my meds. Since stopping I have pain, blood, more frequency (about 6-8 times a day) fainting, headaches, sores on my arms and mouth. I emailed my Dr today and she said she was going to stop my meds anyway so it wasnt a big deal already had and didnt seem concered about the symptoms I am now having. I really do like my Dr and think she is highly competent but….. I cant think this is normal and nothing to worry about. People dont have blood and pain and use the toilet that many times a day when nothing is wrong!
Things are so bad i considered going back to emergency on Saturday night but I feel stupid and like I am wasting their time. I don’t know when the right time is go seek medical attention for whats goings on. What do the rest of you do? I told her about another incident a while back and she advised me next time it was like that to go to emergency but now that she has said I don’t have it I think I shouldn’t go???? Oh this whole lot is so confusing!
i am going back in 3 days to see her so she can see my sores and I’m not sure what the outcome will be. hopefully she is right and nothing is wrong. Hopefully everything settles down and I can get back to how I was before all of this started.
Where I’d like to be in a year:
Well since all of this started I have cut my work in half because i simply can not leave the house some days. I can’t go anywhere I’m not familiar with as I may need the toilet without any notice. So in a years time I’d like to be healthy. I’d like to be NORMAL. Id like to only go to the toilet once a day and when i do to not see blood! Id like to be able to play sport again and not feel like i have no energy.
So Sulfasalazine is all Ive really taken and I dont know if it worked. If you gage your healing on the meds then yes it worked but if my Dr’s diagnosis is correct and i dont have UC at all then I may have been taking it for 2 months for nothing!
Probiotic…. Same as above!
My opinion: both worked extremely well. I think it cleared up during the time of taking it as now that im not on it things are getting progressively worse again!
written by Michelle
submitted in the colitis venting area