New forum member, let me feel some love!

Hi there, everyone.

After several weeks of simply reading and researching this forum and the sites and articles people have referenced regarding FT as a treatment option for UC, I've wanted to join in and introduce myself. I'm looking for essentially everyone here is looking for, a working fix for these symptoms.

A little about me and my condition:

I'm 21, female, very active, and generally extremely healthy. when I was 16 I started having some stomach issues (NOTHING like what I have now, just irritation, cramping, discomfort), and after several tests my GI took my gallbladder out. Symptoms did not leave. Surgery was not needed it seems.

Several years went by with no real issues other than cramping and such every so often until November 2008, I was hospitalized with D BMs, bleeding, and those sharp waves of pain many of you know all too well leaving me running to the restroom, unable to produce. I was told I had C. Diff (walked into the hospital with it, did not obtain there) and they had no idea how long it had been in me before I came in. Colonoscopy showed "colitis" and not much else. they treated me and sent me on my way with the prednisone blister pack to ramp down and the symptoms seemed to taper off. No bleeding, and the pain was only really a problem a few times a month, which I'd just pop an oxy and go on with my day.

Since then I had about 3 more hospital stays before they considered it UC, and then a different GI said he wanted to diagnose and treat it as Crohn's. So, I was diagnosed as UC for a few months and since then I've been diagnosed as Crohn's, as I've moved states and every GI i've seen since the move I've told it was Crohn's. Lialda, Flagyl, Asacol, Flagyl, Prednisone, all back and forth depending on the situation.

NOW.. in the past 3 months or so, things have taken a turn for the worse. I moved out to Florida, no symptoms, I was a rockstar. No real issues except around the beginning of November. My boyfriend and I both came down with H1N1 from a coworker (along with 80% of our coworkers at the same time, hah.) which left me wanting to end my LIFE. My caring father, thinking he was being kind had a local New York deli send us about 150.00 worth of Jewish deli/meats, soups, pastries and stuffed cabbage. Try making that sound good right now. Now, however good that doesn't sound to you now, imagine multiplying that amount by how much you'd hate to be locked in a room with Gilbert Gotfried reading every single Jane Austen novel.

So, I got on antibiotics, finally got rid of the flu, bounced back for a few days, only to find myself experiencing one of the worst flare-ups I have ever had in my life. Within three weeks I had lost (and have still kept off, and am still losing), about 30 lbs. I'm still to this day losing about 2lbs a week. As I said before, I was already a pretty healthy active person, and now I'm essentially skeletal.  My symptoms that I've kept since my first C. Diff hospitalization and the new ones now include:

-night sweats (I wake up at least once a night drenched in sweat, usually resulting in changing my tank top, turning the pillow case over, sleeping on top of the blankets)
-bathroom breaks per day are around 6-10, usually only 4 successful (all the rest are just blood)
-BMs now, if not D, are primarily the tissue-like light, skin coloured mess mixed with blood and mucus. The pain is cramping and sharp, coming in waves.
-extremely faint pulse that, will either hang around 60/min with blood pressure of 80/60 - 100/68 max, or peak at 130/min at rest (not much change in blood pressure) with small murmurs when I seem to go into the worst amount of pain
-completely unplanned and uncontrollable weight loss
-occasional mild/moderate joint pain
-extremely poor circulation to my fingers/toes, overall paleness, purple skin blotches on my trunk and knees, thighs and arms that are temporary and only appear when I am in the worst pain.
-insomnia. I cannot stress this enough how horrible this is. Working in a tech support call center job is hard enough when you need to run to the restroom but you need to finish up your 50 minute call troubleshooting, but when you come home and just want to sleep, only to find yourself unable to rest, linking days together into a meta-day compromised of your entire work week, it's a killer. I'm sure it's not helping the bleeding.
-little to no appetite at all. food sounds horrible, mainly because I know the pain involved in it passing through, but I force myself just because the pain of passing nothing at all.

So look. Sorry for the life story, I'm just... astounded to see so many people out there that have symptoms like mine. I know I'm leaving out some other big ones that I've just grown accustomed to that aren't sparking my attention right now, but man. Nothing is helping. I can't keep going, staying 5 days in the hospital, stop the bleeding and the pain, taking the medicine they prescribe to stay in remission, only to start bleeding again within a week or so. NOTHING has helped. I've tried pretty much every drug discussed on here prescribed from GI's other than remicade.  FT seems like, after every single site I can find on it, like the next thing I want to try. I see nothing gross with this treatment, no "ew" factor.

Does anyone have a step by step, day by day, guide to what they did? I've pieced together many of your posts, but I'm looking for something explaining what prep they did, what antibiotics they took, what dosage amounts, what they explained to their doctor to get said antibiotics, and then the actual process they took for the FT including what they used to strain, get the consistency, where/how/(if) they had their donor screened, and generally anything they tried that they would want to share for fellow sufferers. Hell, I'd even like to know where they purchased the right sized enemas/syringes, and how they passed the time while they let it rest in their bowels.

Again, I'm looking forward to being a part of this community. Take it easy!

Diet and natural supplements are always good (I like turmeric and fiber), but I wanted to ask about your medication use. Have you ever been on anything like, long-term? Not just to make the symptoms go away. I'm still on meds even though I'm in remission. If the asacol and stuff helped at all, you might go on that and stay on it. Or you might need something like Imuran/6mp. I would prolly do a course of pred while the other meds start working, then taper off (but keep the maitenence meds). The turmeric/circumin is good.

As for your symptoms, I do have arthritis from my UC, and also Raynaud's which is a circulatory thing I guess. My circulation issues (mainly in my toes/feet, my toes will turn white sometimes and my feet will get dark red/purplish) don't seem as bad as yours... could you get a reccomendation to a GI from your normal doctor?

Have you been checked for Lyme's disease? Maybe just a coincidence with your gut problems, but your symptoms sound like my friend who had undiagnosed Lyme's disease for WAY too long. Please ask to be tested!

Antibiotics will cause flares, avoid them if you can.

I don't dispute diet and crap, I think it's great. But I didn't see that she'd tried everything, and I didn't see for how long. If she only did it long enough to stop the symptoms and then stopped taking it, it could be why they don't seem to be effective. Or, maybe they just don't work. Doesn't work for everyone, I know that. Personally I feel I've tried plenty of supplements and I've tried diet change and nothing helped me enough to rely solely on that. Meds help me. If other things work for other people, great.

If this comes off as harsh, excuse me. I am not in a happy mood at the moment. Sorry.

Hey guys, thank you all for your quick responses!

Elephant, you're fine. I was in a pretty b***hy mood this morning, so I can relate. I'm not taking anything too harshly at all, I know I didn't exactly divulge.

To be a bit more clear, I was not diagnosed with ANYTHING when I had my first starting symptoms and had my gallbladder remover. (other than just a bad gallbladder I suppose), which turned out not to be the case (or at least not the contributing factor) to my symptoms. I was then diagnosed with just generic "colitis", then "ulcerative colitis" then "possible crohn's or UC", then finally "possible Chron's". Like I stated, I've moved. I've seen 6 different GIs in 3 different states and none of them give me matching answers or colonoscopy/test results. It's all been very elusive. Only recently have my symptoms become so dramatic that I took research into my own hands to, not only look for a cure for myself, but look for an actual title to give it and the closest I can come is UC. the bleeding, the noisy gut, the unexplained weight loss, the nausea and loss of appetite, the feeling of needing to go all the time, the double digit bowel movements, and all the other seemingly unconnected symptoms like the joint pain, skin blotches, insomnia, etc.

When I say I've tried almost everything, I've tried almost all the big treatments that you're prescried to hold remission once out of the hospital. not one thing has kept the bleeding and flares at bay longer than a week. I don't want to keep taking meds if nothing seems to keep, especially if it's possible that meds got me into this mess in the get go. (antabiotics I suppose, although I really think it was having C diff for an unknown amount of time without treatment). I am completely willing to try FT. If FT does not do the trick, I'll most likely talk to my current GI with all of the information I can gather from all my previous tests, including a scope before FT and then after, and see if remicade is for me.

My diet is not really too much for me to consider a factor, I used to be on all sorts of sports teams and swimming back in CO so I trained myself to get out of the kiddie/tween way of snacking on candies, fried foods and soda. It's a cold day in hell when I go out to eat and order soda or anything that I can see my dinner guest through a napkin if I rub it on one.

I'm not sure if any of you are familiar with Dr. Philip Maffetone, but I considered his book "In Fitness and In Health - The No Nonsense Guide to Diet, Exercise, and Disease Prevention" a bible towards my general health. following his advice helped me with a large portion of my current symptoms either diminish into nothing, or become extremely minimal while leaving my overall heath on overdrive. He had a two week test to test for intolerance to carbohydrates (link to a summarized version of this test below) which, as stated, in two weeks left me feeling incredible.

http://philmaffetone.com/fr_thetwoweektest.cfm

Anyway, I'll be trying the FT as soon as I can talk my boyfriend of 7 years (as he's the only one I know out here since the move) to consider being a donor (that'll be a fun conversation I'm sure!) or if worse comes to worse I'll be flying back to colorado for a week to visit the family and I'll just make it an awkward visit towards recovery. I appreciate all the support already, and I look forward to being a contributing factor in both experience and support to this forum.

Peety: Thank you, I will certainly check to see if this is a viable option as well, since I have never suggested this to be tested, maybe it hasn't been yet.