Confused - advice please

Hi Everyone,

Yes I am STILL waiting for my colonoscopy. So still 'undiagnosed' but my doc thinks UC or Crohn's disease. Saw my GI for an initial consult about 4 weeks ago. He perscribed pentasa (oral) and 1g enemas. Things started improving with the enemas, my stool got firmer (though not normal) and I was having much less blood and mucus (although still some blood) all this happened within a few days of starting the enemas. I thought things were going well, saw my doc on Wed and he said I had a calprotectin level of 200 indicating an inflammatory process and together with a patch of ulceration he saw in an unprepared sigmoidoscopy when I first got my symptoms (in april) he is pretty comfortable with a diganosis of colitis. However, in the past week the urgency and frequency of BMs have been increasing. I have now had mucus most days, and I had abdominal pain yesterday (although not today). Today though I am back to passing wind with mucus/blood/liquid faeces (5 times this afternoon already). I seem to be full up with wind. The blood is pretty minimal and pink, but is definatley there.

What is going on? anyone have any insights? Have I stopped responding to the Pentasa? could it be something I ate? I had my period last weekend, could this be the hangover from the hormonal swings? I have a couple of other infections at the moment (started doxycycline yesterday for an infected fingernail), would this be enough to upset my immune system?

I would love to hear peoples experiences. I had just begun to think that things were on the improve and I was on the road to recovery and now I seem to be on a downward sprial back to where I started. This is particularly hard as I still don't have an official diagnosis - although everything is consistent with UC/Crohn's there is always that doubt. And now I seem to be back on the downward spiral for no rhyme or reason.

Thanks y'all

Hormones and antibiotics can definitely cause problems. I agree you should add a probiotic to see if this helps. It may help with the gas, too, or maybe diet modification would. Refined carbs, sugar, and dairy, along with the usual offenders like beans and broccoli, all seem to increase gas for me. I try to eat to reduce gas when I'm having the issues you described.

Hi everyone,

Thanks for your responses. I am just feeling so down at the moment, because I don't have a diganosis (i.e. haven't had a c-scope yet) I know that I might not be getting the right meds that will target the inflammation where it is. All evidence points to the majority of inflammation being in my rectum and sigmoid, but who knows how far it extends? Anyway, I feel like I had been making good progress until the last few days. And to feel like I am sliding backwards despite doing everything I feel like I can do... well I guess coping isn't my strong point at the moment.

Anyway, I appreciate the advice. I will double my probiotics and hope that helps. To be honest if I had thought that the doxy would do this I would have just put up with an infected finger. Better than running to the bathroom all day! but I had started to slide before I started the doxy, I had six trips to the bathroom on Monday and then loads of mucus on Tuesday - so may be unrelated to the doxy.

I have been doing research into what meds are available to me. I am in New Zealand, and we have an agency called Pharmac which does all of the drug buying for the country. Essentially deciding what we have access too. So, no 4g enemas for me. Only 1g available - and there is no way I can get 400 ml up there! Also, doesn't seem like Colazal is available here either. Asacol is though. Also, the only steriod enemas that are available here are the cortifoam - is this what you get in the US too? or is there other kinds of steriod enema.

First time I have ever felt let down by our health system... but maybe there is other ways to access these drugs. I guess I will find out if I ever see my GI again (I still don't have notification of my c-scope date - could be another 4 weeks!).

I have tried cutting dairy out of my diet, and that seemed to help. Also had cut coffee out as well, but this week I faltered and had a couple of cups (it is my addiction), so I guess I may be paying the price.

Thanks for your advice, it is very much appreciated.