This letter from the IBD nurse irritated me more than it should have done

Well, you are going about things the right way, I would say. And I'm glad to see that there is hope for your new PCP. I didn't suggest that you try to enlist your PCP's help as I was under the impression you had already tried that approach w/no success. Thank goodness I remembered that wrong and I hope the PCP angle works out for you!!!

Jalapenos??? Whew! I wouldn't even have enough courage to eat them when my gut is acting top notch healthy!!! A lot of the different spices don't like me very much. *sigh*

I absolutely adore and crave raw veggies but my gut is NOT fond of them. I have to be very careful and only eat them in moderation when my gut has been healthy and stable for quite some time. *sigh*

Raw cauliflower, broccoli, CELERY ... to die for - and sometimes I think I'm going to when I've gotten greedy and over done it eating them. Especially w/a veggie dip. Sour cream absolutely hates me. *sigh* Ranch dressing hates me. *sigh*

My gut LOVES a root beer float. Go figure. When NOTHING sounds the least bit tempting or even scarey a root beer float will amost always settle the beasts down.

NCOT, good you're finding what works for you.

I wanted to give you this little protocol that helped me in the acute stages of my illness last year. Everyone likes a nice warm cup of tea right? Well, i'm sure you have heard of the mucilaginous herb, Slippery Elm and its benefits to healing of the mucosa lining in the intestines... My doctor gave me this little tea combination last year.

If you can find a health store that provides herbs in loose leaf form, make up a bag of Slippery Elm, Licorice and Marshmallow Root and then another bag of Chamomile & Peppermint. Shouldn't be anything more than $10 bucks for these. Add 2tablespoons of the slippery/licorice/marshmallow mix to a small pot of water and bring to a simmer (10mins or so), then take off heat and add 1tablespoon chamomile/peppermint and let sit for 5 mins. Strain, serve and drink up! The slippery elm combined with other herbs makes for a gooey like texture, and thats the part that is very soothing and restoring to the mucus lining.

Licorice stimulates the adrenal glands, marshmallow promotes tissue, and chamomile/peppermint are relaxing and great for digestion. Maybe you could give this a shot at some point, see if it helps relax you in any way. :)

Cheers! I just had a gluten free beer last night as well.

Post Edited (stereofidelic89) : 9/2/2012 7:17:23 AM (GMT-6)

Thanks folks! Sorry I have not posted for a few days, I have been rather depressed. So, what's different about that? Absolutely nothing... :-/

First off, I did send the IBD nurse an email and she never replied. But it wasn't her fault, as the sodding thing didn't go through, something I only found out by checking the spam inbox. Swear I used the right email address, so I'm going to have to find out if that's changed. Cannot be arsed emailing again, so I'm going to have to do the thing I hate most in the world - and phone up. In fact I'll do that now...

*five minutes later* Wasn't there - she literally never answers the phone - so left a message. I dunno even if she'll get it or not, because she said she was away from the 24th August but brilliantly didn't give a return date.

@Mywowgirl - Well, one thing to remind your GI of and that is, CRP is not always a reliable indicator of disease activity - in some people it is, but in other people it correlates poorly or not at all. Anyway, glad to hear your PCP seems to be decent (PCP is equivalent to a GP, I think). A good general doctor is not to be dismissed lightly; I have a great GP who has been a godsend once or twice. If I could have him as my gastro doctor as well, I would - although my actual gastro doctor is pretty good, it's just his nurse I'm not overly fond of.

Anyway, good luck with your current course; hope you find a combination of meds and diet which work.

@BabeintheWoods - My highest CRP was 350 <_<. That was nearly a year ago, when I had gone to hospital after extreme pain and high fevers even on Remicade. My consultant reckoned it was gastroenteritis (completely wrongly, imo) and I was sent home a few days later without having been on any steroids. Literally fell ill again the night I was sent home, stuck it out for a few more days, contacted GP who was brilliant, ended up staying another 9 days in hospital.

Re CRP - anything below 7 is considered 'normal' I think, although in the NHS it seems to be more like: anything under 100 is considered okay.

@dave - I'd easily miss bread the most, but that's probably 'cos I rarely get a chance to go out to nice pubs any more. It was different back in the days when I actually had a social life and regularly drank. (Still remember drinking blue beer at a Star Trek-themed pub with my friend and her Star Trek-obsessed boyfriend: the zenith of uncool! >_>) Never much liked wine unfortunately, even though I'm female. Even expensive wine I find hard to drink more than one glass of, and as for cheap white wine, I may as well just cut to the chase and drink battery acid.

I've heard of LDN, considered it, like I've considered a few other things (anti-MAP antibiotics for one thing), but ultimately I think my colon is old and knackered, much like its owner, and basically unfixable. Surgery is the next step for me, as long as the colorectal surgeon is still willing...

I love home made chicken stock >_>. It's nicest of all while it's simmering away on the stove and taking spoonfuls of the nuclear-hot liquid, imo.

Literally have not had a bath for 15 or 20 years. (I get showers!) If we had a nicer bathroom, I'd be more tempted, but our bathroom, while clean and perfectly all right, is not exactly luxurious. I'd want a bubbling jacuzzi, underwater lighting, the full 5-star hotel works >_>. Still, it might be an idea: standing up in the shower can get a bit tiring, tbh...

Have considered trying the SCD diet without actually doing the diet proper, funnily enough. High quality probiotics, such as VSL#3, cost a fortune from what I remember, and the SCD yoghurt seemed like a good, cheap way of getting bacteria instead. Of course if I get my colon removed then I probably won't need additional bacteria anymore...

*wilts*

Getting knackered. @stereofidelic - I do have a health store within easy driving distance. It's quite a good store, but not sure it does all that! I'd have to check. Does it actually feel soothing to the guts? Anything which would soothe these sore guts of mine sounds like a good idea at the moment, tbh, since all food just feels like it aggravates it.