I finally got to see the top man himself- "The Prof"!... I have nervously battled and debated with his colleagues for months about symptoms and side effects and their opinions on everything being a mystery and probably not Crohn's related anyway. So, I must have been positively manic when I finally stepped into his office, because finally I was sitting here, feeling crap. I no longer had to describe things, I could also now show them. It turns out my mystery rash is probably Crohns related, joints being sore too and headaches a side effect. I even found out that my anal leaking is fixable (now whether they'll get around to it or not is another story....).
My only qualm about talking to this lovely competent doctor was this; he insists I must stay on Infliximab to really give it a chance (its been almost 6 months now with absolutely no change)- the reason being that my options are limited. The type of Crohns I have has potential to get quite aggressive, and without medication I'm facing more fistulas and surgeries. But despite all this he tells me to remain positive. I left feeling somewhat confused.
My surgeon finally believes me that the Silicone plug surgery has failed, but due to cutbacks in the health dept they can't get me a bed any time soon. I need another scope and I'm on precautionary anti-biotics until further notice. The hippie in me really doesn't like the idea of anti-biotics to prevent infections... but then I'm not the one with the prescription pad.
Lately I do feel like I'm losing a bit of my positivity because all my bloods come back normal, despite diarrhoea up to six times a day. I have migraines, sore joints, a persistent rash, constant cold, worlds worst healing, fatigue, anal leaking (yuck!) but then to top it all of- a new symptom appears!! I get tremors in my hands. It comes and goes but drinking coffee, or reading a book it's quite noticeable. When it happens, I look like someone who has hit the bottle for many years, and then suddenly stopped. I'm anxious to know why it's happening, but afraid I'm going to get a hypochondriac stamp on the front of my file. I don't want to lose credibility with doctors, yet I don't like suffering in silence. i mentioned this at my visit to the infusion clinic and he ran through a list of possible things, but mostly admitted he has no idea.. this has lead me to think; I felt this hopeless before I got diagnosed with Crohns, maybe there's something else that explains the symptoms that are a mystery. Perhaps they don't fit with Crohns, but together they fit with something else. Either that or I've lost my mind completely..
do you drink coffee often? if I'm in crisis caffeine is a huge no-no for me. I find different docs say different things regarding diet, but it might be worth consulting a nutritionist if you haven't already. Some people swear by the SCD diet, which I find too difficult. Something like a low-residue diet might be good for you to try? A nutritionist could also help you figure out if your Crohn's is more of a food sensitivity issue and you react to certain things. Just throwing some thoughts out there, good luck and feel better!
ReplyDeleteMy docs dont seem to think diet will give me any relief.. but i do think their view on this one is BS! I find goats milk really helps in place of cows milk brill during a flare. Coffee was something I used to drink far too much of, now I would have about one cup a day max. I would love to find a diet suited to me.. on the other hand I do love my food :P
ReplyDeleteHello
ReplyDeleteIt all sounds rather unpleasant, and disturbing. I don't think you will be seen as you'd be seen as a hypochondriac for asking the questions and trying to find out.
It's hard to stay positive sometimes. . . I remember that well. It is important to find some positive head space though, I think.
Jane has made some good points too.
Anyway, I wish you a really good 2012