Jake, Did they tell you how long that does should last you? Or can you tell how long it lasts after you get a dose?...
If the disease is caused by pork, milk or water; maybe a water filter would help? I'm not trying to be obtuse. It would be such a tragedy if you're being treated but are still being reinfected....
It sounds like you haven't tried Stelara yet. That might be an option instead of Humira. Also, if you haven't tried it, some GI will offer dual therapy. This means you take a biologic like Stelara...
You could try this one and see if there are people near you: https://www.crohnsforum.com/sgroups.php...
I'm interested in building up my Glutathione levels. I see some older threads that indicate people have had good results. Has anyone tried this recently? If you have taken it, can you share in what...
Phase 2 Stage 1 is Canada only. Phase 2 Stage 2 will include the USA. The FAQ says they are not allowing ostomy patients. Does the video say anything about a change in these plans?...
Does Stelara work as well for you as the TNFa treatments?...
I applied for the Mayo stem cell treatment a couple years ago, but my fistula's were not the right type for the Gore fistula plug. However, because of my pursuit of that trial, my GI made contacts...
I never received a copy of the test. The lab sent it to the doctor but neither one posted the test result in the my chart page. I'll try to call them and see if I can get a hold of someone to do...
Has anyone read about treatments in late stage development that are not Stellara or Remicade copycats? My GI wants me to switch from Remi to Stellara. I've been on Remicade / Mercaptopurine combo...
I have not noticed any ill effects when I take Stevia in place of suger. I also notice that Stevia does not give me any acid reflux type symptoms either....
I ordered some charcoal filters that you can attach externally to the bag. I don't know how these work or whether my dr/insurance will approve the order. If I get them, I'll try to figure out if they...
Seems like coloplast bags put out more odor than other brands. I've noticed it as fast as the first morning waking up after putting one on. I like coloplast products other than this issue. Has anyone...
My symptoms actually improved after doing the prep. Getting rid of the fecal material helped calm the immune system for a short period. The prep can cause dehydration. You want to be sure to drink a...
Humira, 6MP, Azathioprine or an ostomy are also options. I have an Ileostomy. That attaches to the small intestine, so the colon is entirely circumvented. Trying new treatments takes a long time....
Brian, You're on some high levels of Prednisone and Hydrocortisone. Is that still the case now that you're on Entyvio? I've been at those levels in the past too. I finally had to go to an Ileostomy,...
Your GI doc can change the Remicade dosage and frequency. The dosage levels I'm aware of are 300mg, 500mg and 700mg. They can reduce the infusion intervals from 8 weeks to 6 weeks (not sure about 4...
http://www.medicalnewstoday.com/articles/284068.php I realize this is a couple of years old and many of you may have already seen it. I'm kind of amazed that someone is even working on this problem....
Is the loop ileo where they connect both ends to the pouch? And the end Ileo is only connecting the still active side?...
My biggest concern at the moment is dehydration with the Ileo. I've not heard of diversion colitis before. Does that usually take a long time to appear? Did you reduce your meds with the ostomy? Or...
I don't think she gave all of her reasons. However, I believe she prefers resting the whole colon as you say. I think she also feels it's simpler surgery that involves less cutting, it's easy to...
Thanks for sharing that. I saw there was another stem cell study called multistem that failed too: http://www.athersys.com/inflammatoryBowel.cfm The Mayo Clinic is doing well with using stem cells to...
I did dual therapy too. Humira and 6mp. It was not enough to get my condition down from a severe rating. We switched from Humira to Remicade a year ago. I noticed a small improvement. Last summer we...
I'm going to have one of these put in in a couple months. I was wondering how these compare? For those who are new to it: Ileostomy: Attaches to the end of the small intestine. Colostomy: Attaches to...
No Vitamin D?[/quote] I don't remember taking additional vitamin D. I was taking a mulitvitimin. I had a lot of things going at the time. There could have been something that had D in it....
I'm interested in getting some advice for off label usage for either of these drugs. Does anyone know if the patient assistance program can be used for off label usage for either of these? Has anyone...
I noticed when I started taking steroids that my gums became sensitive and receded. I also noticed sensitivity in my jaw under my front lower teeth. I was told this could be caused by bone loss in...
Does anyone know if drug manufacturers will allow someone to use their Patient Assistance Program to reduce drug costs for off label usage? I'm thinking Xeljanz and Stellara specifically....
I don't think the age of the fistula matters, just the shape. A seton is required prior to doing the procedure. You could get that done with your local surgeon before going to Mayo or have Mayo do...
I applied to get into this study at the Mayo Clinic a year ago. Unfortunately, I was rejected. My fistula is horseshoe shaped and that doesn't currently qualify. However, I thought I would share this...
Doctors have been able to convince insurance companies to pay for Xeljanz? It can't be cheap. Does anyone have experience with getting insurance to pay for it? Is Xeljanz being manufactured by more...
Has Xeljanz been approved for UC or Chrone's in the US? I can't find any news releases that say it is. The best I've found is a Pfizer study in Phase 3. If it's not approved, how do you get access to...
It took me 6 months before all the water retention was gone. Don't forget that steroids really weakens your muscle and connective tissue. Your body has a lot of rebuilding to do with muscle. That...
Sorry I didn't share anything about probiotics after all that! That must be what VSL#3 is. I use Primal Defense Ultra. Directions say to use 1-3 units per day. I'm taking 1 with each meal for a total...
My condition is severe. Immodium doesn't do a thing for me. It used to help when I first started having trouble. One concern I would have here: Immodium slows the movement through your gut, but it...
They do have a patient assistance program: http://www.entyvio.com/hub/ That's a very well designed user friendly site....
That's a good point about insurance coverage. If your insurance doesn't pay for Humira or Remicade, they have a patient assistance program that provides it for free. Maybe they'll do that with...
Saw my specialist on Thursday (5/22/14). He told me that Entyvio has become available this week. Is anyone out there going to be starting on this? Does anyone know if there's new research on this...
I believe there's no surgical option for Chrone's sufferer's, so this could be a really great option for some. Levi, best of luck. I'd just get the paperwork filled out anyway. Talk with them when...
If you have friends with chrone's, QuBiologics is now accepting US patients in their trial. http://www.qucrohnstrial.com/ If they have success with Chrone's, we're next!...
Pure Encapsulations (the same company) sells straight curcumin too (95% curcuminoids). I don't know how the Phytosome makes Curcumasorb more successfully absorbed. PE seems to be concerned with how...
I saw my Dr this morning. He told me to start Boswellia 250mg 3x / day. I think that's lower than a lot of folks take it at. I should have a note from the medical assistant soon on the brand they...
I checked the resources thread and saw some information and links to research on curcumin. I think I'm missing how to get to the more detailed stuff? I'm finding a lot of low cost supplements...
Need some advice. I'm taking 6g / day and I don't think I'm getting good absorption. I've read that people suggest piperine. I can't take that as pepper irritates my symptoms. I'm thinking perhaps I...
I'm going to try the 100mg/kg. That's 6.2g for me (8 units 3x/day). My doctor says, "go for it!"....
Careful, now everyone is going to be doing the burping thing! I'm taking 1.5g / day (6 units). That's the max listed on the bottle. Maybe I need to increase this to 3g / day? I noticed a big decrease...
Hi, I just wanted to share this solution. I started taking curcumin, which is a turmeric extract. It's considered a powerful natural anti-inflammatory. It's helped get my bleeding down to a very low...
I agree. I think this could be a successful way to treat a lot UCer's. The first article I saw on it was this one:...
The article says the FDA will review to approve on Feb 18, 2014. The committee seemed more concerned about which patients this would be available for as opposed to whether it would be available....
Some sushi has chili sauce and some have an orange sauce on top that can be spicy. For myself, I avoid the spicy stuff. Fish and rice work very well with me. I am not aware of any infection risk that...