Oh, I am so sorry to hear they are saying that. Are you stopping Remicade? What next?...
So sorry he is going through this now but glad you moved on it and caught it. Please let us know how things are going....
Bella'smom, My teenage son presented with UC much like yours - sudden, very severe pancolitis (and C Diff for him). I know what you are going through and am so sorry for you both. You are flooded...
Thanks for asking, banana girl and thanks for your comments, all. Well, we have seen a modest but definite improvement. In answer to your question, Steven, yes, he did have an initial response to...
Nor the blender for the smoothies then, right? :smile:...
MereDith610, You can use a small metal mesh kitchen strainer (got ours at grocery store in the kitchen utensil section). I set it on top a small funnel and insert the funnel into the enema bottle....
Erin, I am so sorry you are going through this and glad you reached out. My son was diagnosed with severe pancolotis 10/12 (15 at the time). He has not been able to participate in most things and it...
Your initial list is likely right on track. I have found the book, "inside Tract" by Gerard Mullins to be the most well-rounded and sensible regarding diet and gut health. It does not advocate only...
Just wanted to update to say we are doing much better, thanks to your help! We combined lots of the suggestions and he is now able to get about 200 ml in. He first puts a small amount in, then has...
Just came back and saw all the replies ( was too busy with those 30 enemas to read here, JK!). We are aiming for daily and will carry on through May then reevaluate his progress by mid June, so we...
Sorry to post another FT question! I know there are threads on this but I could use some very specific questions answered, without sifting through the lengthy threads. We are under a severe time...
Lots to think about....THANKS ALL!! Tankor - that is some position to hold! But he is young so I bet he can do it! To get to 12 hours it is worth a shot. I think we are still too thick, too. Will go...
Thank you Edbar. That is good to know. It went better this time but he might be interested in trying different supplies. Now to help him hold it longer.......
OK - About to retry! THANKS!!!!...
Do you mean the white valve thing inside? NO....going to try that now.... Thanks banagirl!...
Having a frustrating time with our home enema FT's for my teenage son. We are using Fleet bottles and are using saline solution. We are straining the blenderized emulsion, and still the solution is...
Dawn - My son was not able to get rid of the bleeding since dx in September (Neither prednisone nor Remicade stopped it completely). His diet looks very similar to yours (no gluten, no dairy, no...
Excellent, aguy. I was going to ask if anyone has tried the hi-maize and here it was, good to know. I had looked at a product online, but was nervous about it. Can you tell me what else is in your...
So wonderful to read how well you are doing and all the positive support you have! Good for you!!This is encouraging to those of us who might need to consider surgery as well. I appreciate your...
Definitely can be a gastric irritant for several reasons, including the caffeine. My reading on UC says avoid coffee and alcohol, and my reading on leaky gut suggests only 1 or 2 cups black decaf...
Banana girl, I wonder If the bromelain has something to do with preventing cramping? I see you just posted about adding the bromellain due to research. Can you explain what you found?...
Excellent info, thanks! I just received Boswellia but haven't given it to my son yet, and would think the curcumin he is already taking would suffice for the turmeric (?). I too would be interested...
Our experience was like notsosicklygirl. I think you are on a good track, Canadamark. I have lots to say on this topic /community/emoticons/smile.gif SCD as it is written is incomplete, IMHO, and...
Yes, I got the sodium butyrate from Amazon. Still have some cal mag left so I think we might finish that up first? Here is what my book, Inside Tract, by Gerad Mullin (excellent book and author who...
I got the wrong butyrate too and thanks to Pathogenkiller just ordered the sodium-butyrate instead. GutsZilla - I got a great deal on the zinc-carnosine ordering from Vitacost. Doctor's Best PepZin...
Missk, Wondering what a typical food day is like for you. Meat seems to be the most difficult thing for my son to digest, so we are SCD/paleo dropouts. He eats VERY little meat now. I am trying to...
Thank you, LutzFL!...
Good for you! Your experience would seem to coincide with this: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774255/...
That is great, aguy! What a relief for you! Think we are seeing some improvement in frequency and consistency...don't know what that means - too early to tell (and we've been there before...). But I...
Thanks for the type explanation. Now I get it....
freddyj, Sorry about the thrush on top of everything else, but it can happen with some of the meds as well as UC in general. Can you ask for a round of fluconazole (Diflucan)? You just might also...
Great, IBDISTHEPITS! I tossed a small amount into a veg broth based soup with some other easy to digest (for him) vegs. I also made some white basmati rice (he cannot tolerate brown yet - says he...
Glad you found the Edenfoods brand, guywithuc.We don't have Whole Foods but we do have Earthfare, and their store brand appears to be the same as edenfoods. Slowly giving my son just a small portion,...
Canada Mark - clinical response was defined as a redcution in PUCAI scores by 15 or more points, I believe. Remission was defined as overall PUCAI score indicative of remission which is less than 15...
Ajaja, Wondering why your doctor is so quick to dismiss fecal transplant? Like everything, the results vary, but studies are very promising. Perhaps she wants to reduce inflammation first? I do hope...
Excellent find Old Mike, thank you! Been waiting on these results!...
Nice to read a success story like yours! Enjoy your good health!...
PK - thank you for sharing your whole story. You have been through so much I hardly know what to say! What an amazing job you have done in perservering and working toward wellness. Thank you for...
Aguywirhuc- thanks! I know everyone is different, but I am encouraged by your results. Just FYI, Edenfoods brand "properly" prepares their canned beans (soaked, then cooked with Kombu) which...
Thank you for everything in this thread! The RS and butyrate is our current chosen path as we race against the surgery clock (just found out our teenager has Remi antibodies so are running out of...
Pathogenkiller - just found all your info and experience on the other thread on RS. Seems to have made a huge difference for you. I think it's worth thinking about switching.... Killcolitis - can you...
Pathogen Killer - that's what I noticed too...hmm. Aguywithuc - that disclaimer is so confusing! What do you make of that? Everything else written there, especially the fact that it goes directly to...
Thanks, KC! We have the cal mag and I was worried we got the wrong kind....
Does anyone know which one is better to take - Cal Mag Butyrate or Sodium Butyrate - and why? Thanks!...
As a mom of a teenage boy with UC, I am so happy for you as I read your progress on Remicade! So wonderful you are getting back out with friends - I know how isolating this disease is. Enjoy your...
I have a recipe for crepe/wrap using chick pea flour that I would like to try. It has been part if items my son has successfully eaten, like gluten/dairy free pizza so I am eager to try it some more....
Therearemiralces, my son could not take Flagyl and did much better on vancomycin. But this was to treat c diff. Not sure if this is a possibility for you?...
Labratjc - I am sorry about that. It is so hard to make these decisions when the drug appears to be helping otherwise. We are constantly weighing cost vs. benefit with all these treatments and I wish...
Hi Nancy, Glad you posted this! I suspect for some low sulfur can be really helpful. We just started this for my son who was also recently diagnosed and it has helped his discomfort level (ie...
Thank you, Dawn 89! He is on VSL-DS, a really good fish oil, curcumin, l-glutamine, Remicade, gluten free, I won't bore you with the rest, ha! After a recent dose of floconazole we were able to get...