Well, this has been an interesting week. I went to see my GI on Tuesday with a little bit of trepidation as I hadn't followed his instruction...(see previous blog)..little did I know how badly he was going to take this. Now the French can be highly strung and are quite likely to through a wobbler at you over something that wouldn't really bother me, but then again we're all different and react to things differently. Anyway, basically I told him that I hadn't done as instructed with the medicines, but had in fact finished with the predisolne and wasn't going back on them at least for the next couple of months. They are evil little tablets, but unfortunately for me, they are the only thing that works to bring the flare up under control. Now that I'm finished them though, I'm told that it could be up to 6 months before my own body is creating the correct levels of cortisone.
Also of note, is that the bleeding and mucus had actually subsided. There still is a bit of mucus, but the bleeding is now minimal and hopefully will become less and less.
So what did I do to get to here....well I moved away from mesalazine and back onto Sulfsalazine(both 5-ASA). For me mesalazine wasn't working..I have no idea if it ever worked neither as I was put on sulfsalazine first, but came of it when I got headaches. Anyway, I tried mesalazine for over a year and it didn't seem to make any difference..in fact I only got worse. I also am back on the wheat grass tables, Vitamin B (for stress), daily Probiotics via yogurt and have a Paul McKenna CD to try and change my life in 7 days.
I've not been very good though with the refined sugar over the past few days...those damn Easter Eggs :D
So back to my GI...well basically I wasn't asked to make a further follow up appointment. Maybe I'm being too sensitive, but surely (and as has been the pattern for the last 9 months) he would have wanted to check up on me in a months time....oh well, not this time by the looks of it.
Maybe this should be the catalyst for me to find a new GI :D
I think it should be the catalyst to find a new GI. It's sure hard to find a good one, I had a lot of trouble. I also found that mesalamine did not work for me when I was in a flare up. Actually nothing did, which is why I lost my colon. lol
ReplyDeleteBut yes, I would think your doc would want to follow up with you and see how the medication is working for you and check on how you are doing and come up with a plan that works for you.
I am glad the blood has subsided. :) Hang in there.
Hey Paula! I'm on Sulfasalazine too! Is your pee like super neon yellow like mine!? I've only been on it for a couple of weeks, but symptoms have been subsiding. The only thing I have to complain about is that it makes me a bit queasy. I figure I can live with that as long as I'm not bowing to the porcelain gods 15 times a day. A good doctor is soooo important! Hope you find one you really like that can help you deal with your UC in a way that satisfies you. Hang in there lady!
ReplyDeleteHi Paula! I have to tell ya I laughed when I read your blog title. It was too funny not to. I know we are taught to believe drs know best but sometimes I don't know if I agree. I think you know your body better than anyone else and I think you need to do what is best for you. And... I think I agree with everyone else... time to find a new GI! A good one!
ReplyDeleteTake care!!
@ Zen - Do you have a bag now or have you moved until a J-pouch? Either way, how do you feel and do you have any UC hassles at all now?
ReplyDelete@ Whittles - oh yes...very yellow...but that means it's working too ... I got headaches in the begining which is why I can off, then when I went back on I made sure I drunk heaps of water.
@ Jodi - I have no confidence in GI Docs (or normal docs come to it) now, which is bad...I found out what was wrong with me first through the internet, then proceeded to stick my head in the sand which I thought would make it go away...doh! or maybe wishful thinking :D
10 months until I get home for good...some people would think I'm lucky to live in France and to be honest so would I if I didn't have UC...but that which doesn't break us can only make us stronger...and the stuff I have had to learn here will be useful (if not to me), but to others when I get home :D