I get the canker sores when I'm flaring. peety, what you have sounds like hidradenitis suppurativa. I've had it since I was about 18. Mine has always been fairly mild, but it definitley is a horrible...
Thanks NiRo. Maybe I'm misinterpreting, but it does say "for patients with colitis no diagnostic tests work well..." This makes it sound like people with UC are screwed as far as being screened for...
I just read the article and found this to be quite unsettling >>"Although colonoscopy is very effective in screening and preventing colon cancer for most people, for patients with colitis no...
I'm always interested in reading about alternatives people are using to help with UC. I did some reading on BP and apparently it's an antibacterial among other things. Do you increase your Probiotic...
They put dyes in pills which I think is also ridiculous. We're trying to get better, not sicker. What if you're allergic to the dyes or unnecessary additive they put in these meds. They should at the...
Hi suebear, Thanks for your reply. I thought pharmacists would be a reputable source to find out. Two of them were sure that it wouldn't hurt as a very small amount would be absorbed by the colon and...
My DH and I watched a show about Ayurvedic medicines and it was fascinating. I do believe there are alternative ways to help ourselves than western medicine. I'd love to have a doc that was into both...
That makes sense quincy. I never thought of the asacol as being topical because you take it orally. That hard coating prevents it from releasing until it reaches the colon...so topical it is. I...
Hi Sara, He told me that because, though rare, asacol can cause liver, kidney problems he wanted to keep an eye on things. He said the same wasn't true of the rectal meds though. I wonder if my GI is...
Hi quincy, Thanks for the input. There really isn't much information out there on vitamin e enemas except for what the 'infamous' Sheldon has written about. I did find a study that has been published...
I was on oral meds only for quite a while and it was doing nothing. My UC wasn't getting worse, but not getting better either. I forced my GP to Px the enemas and sure enough I started seeing results...
I've been adding 8000 IUs of vitamin e to my Salofalk and it really does seem to be helping. I've done a lot of reading on it here and through google. I haven't found anything that says it could be...
Hi Nicole, You don't mention how far up your UC goes. Fruitgirl is right about the rectal meds. You need to ask your doc about using an enema. Anusol is for 'roids isn't it. What fruitgirl is talking...
notsosicklygirl, Have you ever tried the enemas along with suppositories. I use both when I'm flaring. The suppositories are good for the very end part of the colon and if you pull the enema out...
Thanks again quincy. I see what you mean about the study, but it would be a valuable thing to know IF it could be studied. I have noted that the people on the board that have had it spread have...
I like to use extra virgin coconut oil instead of butter....
Thanks for your thoughts on this Eva Lou. How far up was your UC when you stopped the oral meds? I can see that stopping the oral meds would be a problem if your UC goes up past your sigmoid because...
Hi quincy, I haven't been taking the asacol for quite a few months now. I prefer not taking the asacol if I don't have to, but was concerned, so that's why I asked him about it spreading. He assured...
My boss heard me gurgling -- or as I like to call it, the whales singing -- and she thought I must be very hungry....
My GI and I had a talk last time I was there and he recommended that I up my enemas to every second night (unless flaring-then every night) and stop taking the oral asacol. I was a little afraid to...
I've been adding vitamin e oil to my 5ASA (Salofalk) enemas for a couple of weeks now and would like to try adding a probiotic t the mix. Would it be safe to add the VSL powder to the enema. It has...
When I'm having a mini flare, upping the Salofalk (Rowasa) enemas to every night works very quickly to bring things back to 'normal'. I usually continue with every night for a couple of weeks, then...
I'm Gina. I'm 50 years old and live about 15 miles from Vancouver in British Columbia. I never get tired of looking at the mountains here. I have 2 boys, 24 and 27. I have a part time job working for...
I use it on my salad and have never noticed any problem flaring or not....
Hi Bev, Thanks for the reply. I wasn't sure if phyllodes always grew quicky, but yes, I would hope that they would have sent me to have it removed. I just find it a little disconcerting, because I...
Hi there, I just recently had a mammo and ultrasound and the report said that I had what looked like 2 fibroadenomas and some microcalcifications that were likely benign. The microcalcs (which were...
Thanks Malkavian. The Natren Healthy Trinity is the one that Jini Patel recommends on her website, so that's why I gave it a try. I'm going to try again when my colon is back to "normal"....
Thanks quincy....
I stopped the Natren Healthy Trinity 2 days ago and the cramps, loose stools etc have gone. I'm going to wait, and then try again when I'm in remission. I think starting a new probiotic when flaring...
Hi quincy. Where do you buy your Probiotics?...
I just recently tried the Natren Healthy Trinity which has Bifidum in it and my flare got worse. I got cramps, loose stools and more blood. I usually take VSL and have absolutely no problems, so I'm...
>>>Hello Kitty said: I went to the doc for rectal meds but the doc didnt help me. they said i had to be refered to my GI doc. which is a 4-6 month wait. so no rectal meds for me - lets hope and pray...
My GI told me that it spreads in about 20% of cases. He said there was no way of predicting whether it would spread or not, but didn't think that not using oral meds, if you're well controlled with...
Thanks ickypoo. I did read that you should introduce them one at a time, but I figured since I also have some reflux I would give the trinity a go. It's actually a little better today. My stool has...
Thanks TPT. I must have been in edit mode when you posted. I just went on their website and found the e oil in a bottle. I wonder if it's more economical to use the caps or the bottle. Do you find...
I just started doing the the vitamin e thing. I've worked my way up to 8000IU by squeezing 8 1000IU caps into my Salofalk (5ASA)enema. So far I've been pleased with the results. I think it's...
That's great news! I consider my colitis to be mild even though I was Dxd as moderate. I've read the description of mild, moderate etc online and I feel as though I fit into the mild category even...
When I'm not flaring, I usually have 1 or 2 bms in the morning. I've read that up to 3 bms a day is normal. When I'm flaring though I can have up to 4/day. Sometimes it's just that urge to go and the...
I started to flare a few weeks ago and am just now starting to see improvement. I was having blood, mucus, rectal pain, loose stools and more frequent bms. I've gone back to doing my Salofalk enemas...
Thanks for all the great replies. TPT. Do you mean soy lecithin, or is there a soy lectin? Is that something mixed with the e already or do you have to get that separately? My flare seems to be...
Thanks Dr-A. Did any of them work for you?...
Thanks ickypoo. Did you use distilled water to mix the powders with? What type of delivery system did you use--syringe....?...
Hi there, I'm fighting with a flare right now, so I'd like to try something to go along with my salofalk enemas. My colitis is low down in the rectum so enemas work quite well. Has anyone ever tried...
Thanks quincy. I'm not going to assume the meds have stopped working until I stop drinking the soy milk and see where that goes. I should probably ask to go see a gyne. My Dr. agrees that I'm...
Thanks Christine. It sounds like soy doesn't bother most people. I had read a few accounts of it causing problems while googling. One woman said both her babies got bloody stools from it, which...
Thank you for your replies. Hi quincy. I'm drinking about 2 cups a day. Each cup has about 75g of isoflavones per serving. I know through this whole process (since 2006) I've often had mini flares...
I'm having a flare that just doesn't want to quit. I've been really, stressed out lately due to peri-meno anxiety, so I'm sure that's part of it. I recently started having soy milk (no additives)...
I had a little flare a few weeks ago, but got it back into control within a couple of weeks. I was doing great until today. I'm not sure if it's because of residual inflammation from my last flare or...
I had an ekg done last week and the results came back as abnormal. They told me my p waves were peaked rather than rounded and it could indicate right atrial enlargement. Unfortunately my regular Dr....
I remember reading about GBF on here a couple of years ago (if you google germinated barley foodstuff you'll find the study(s). The studies seemed to be quite positive and I remember a bit of a buzz...