Great kmommy! I wish you all the luck in the world with Seattle Children's or where ever you end up. Hopefully there will be some great treatment options coming in the next 5-10 years. If the...
Hi- It seems that Mesoblast expects FDA approval within the next 2 years, but I don't know for what indication as it seems to treat multiple illnesses. From this article:...
Gumby- Big Hugs and Congratulations on your son's achievements! You must be a great parent to have such a great kid....
Hi KMommy- Try googling 'stem cell crohn's'. Here is one article: http://medcitynews.com/2013/10/first-governmet-approved-stem-cell-drug-will-sell-100m/ It seems that Seattle Children's has done stem...
Hi RheaUK- I'm a mother of 3, and I just wanted to give you hugs. It must be hard to not have parents to help during this time. I had neglectful parents and I had to go to all my own doctors'...
Hi AG- I agree with all the experienced posters- your doctor either isn't experienced with this, or isn't explaining things correctly. You probably need a new doctor. You need a gastroenterologist...
Hi ag23- Did the capsule endoscopy show anything? What is your fecal calprotectin level?...
Hi- You may want to consider takeda entyvio. Just approved yesterday. http://www.medpagetoday.com/Gastroenterology/InflammatoryBowelDisease/45893...
^ Agree with kazbern. Your husband clearly hasn't ever had to deal with similar issues.......
HI Rockstar- sorry to be Debbie Downer... But just because you haven't heard anything back on your blood and stool tests doesn't mean everything is OK. I would call them and ask....
Big hugs and glad this is over with!...
Hi Spunky- Glad to hear that you are going to a another doctor. You may need to go back to a GI, but it sounds like you should go to a different one. Please keep us posted and what you find out is...
Bump and agree!...
Hi Spunky- Anal fissures are common with constipation. To answer your questions: 1) The amount of blood is not as much of a concern as the source of the blood. Anal fissures will bleed. Otherwise, if...
Hi Gumby- I have you in my thoughts and I hope your surgery goes well today. Please post back afterwards as soon as you are able to. Big hugs!...
Hi Gumby- Big hugs to you! I hope your surgery goes very well tonight....
Thanks for the recap. I wonder if the GI changed the billing codes if more of the procedure would be covered. Also, to the billing office's point, the doctor will be paid for the colonoscopy. Maybe...
Hi All- In case anyone wants to try Fecal Matter Transplants Open Biome is a company specializing in vetted poop. Please let me know if you have heard of experiences with them or try them. Thanks!...
Hi- If you want to skip the poop recruitment process, check out openbiome: http://www.openbiome.org/ They have pre-vetted poop cleansed so that you just get the bacteria:) Best of luck!...
Hi Gumby- You sound like such an impressive person, and it seems that you are managing this situation both medically and interpersonally in a perfect fashion. I hope all hope all goes well with you...
I am so excited for you!!! I have heard such amazing things about FMT, especially with C-Diff. 95%+ cure rates, and my guess is that it would be 100% with the right poop bacteria for each patient. I...
Hi All- Thinking about the PDUFA date, UC vs. CD. UC is May 20, CD is June 18 (Thanks Dave :) You may want to ask your GI if he/she can prescribe on May 20 'Off-label'. Once it is FDA approved, the...
Thinking of you and wishing you the best of care! It seems that you are in great hands. Any hospital that has an IBD wing clearly has experience....
Hi SusieQ. Is the woman you met your GI doctor? It seems that you should be under a good GI's care if you are having these symptoms and your colon was removed. Do you have medical access to a good GI?...
Yes, my understanding is that it will be available to patients in June, but I may not know all the details. If anyone knows more, please weigh in....
Thanks for the clarification on the CD PDUFA date. I hope this drug works well and I am eager to hear about your results once you go on it....
Thanks. My daughter is scheduled for an MRI endoscopy this week. We may not know much until after that, or possibly not until we meet with the other GI. I think this needs a doctor with a lot of...
hi Beave- Well, you are clearly educated and going to great doctors. Seems like you are really taking care to understand your condition and options....
Sorry to hear about your dad. What do your doctors say? Also, if you give will this put you in any peril?...
Hi All- Just letting you know that the PDUFA data on this is May 20, 2014. https://www.takeda.com/news/2013/20131225_6108.html From what I have heard from a GI acquaintance involved with the clinical...
Hi Beave- Are you familiar with Takeda entyvio? Its PDUFA date is May 4, 2014, so hopefully it will hit the market on or around that date. It seems really promising. Information:...
Beave- sorry to hear about your troubles, but thank you for spelling this all out for me. Kudos for managing all your issues with minimal meds. This input is good to know....
Beave- question. How has Crohn's presented in your case? Asking as some of your symptoms are similar to my daughter's. Thank you....
Thank you all. She was not on PPI's when the calprotectin came back high though she is on them now. I guess I just need to keep plugging away with the tests that we're doing. Appreciate the input!...
Hi All- going back and forth on Crohn's diagnosis for my 13 year old daughter. Her peds GI and her endocrinologist have run a battery of tests, and the findings are a little unusual. I have an...
Dear Chrohnssucks- 10-year studies show that the risk of cancer is very low/non-existent because of Humira. I also heard about 3 weeks ago that a recent study confirmed that Humira alone does not...
Well, I don't know about the Crohn's pains, but I do know babies. Are your pains 5-10 minutes apart? :) I wish you the best of luck with your pregnancy/delivery and a happy and healthy baby. Please...
Hi Fighter- I am so sorry that you have had such a hard time. The kids and school did not seem to be nice to you. I appreciate your input and I will watch for this. I haven't seen any issues yet. Her...
They are still recruiting and doing a long-term study: http://clinicaltrials.gov/ct2/show/NCT01233960?term=PROCHYMAL&rank=3 Phase II almost definitely went well, this is a Phase III study. Phase III...
Hi Habs- Glad to hear that your SBFT went so well! I hope you have all good things to come.... and congratulations on your clean tags. :)...
Just an update, I started my daughter on EEN. As she was hardly eating anything anyway I put her on Ensure Plus last night, and told her to only drink this for now. This has 350 calories a bottle,...
Hi SupportiveMom- I just researched the EEN for the past hour. This is a great idea and thank you for telling me. I ordered the Modulen from Canada, didn't find it without prescription in the US. I...
Beave- You are 100% right about the growth and I appreciate the ping on this. It is something I am very concerned with as my daughter is 13 and about 4'9". My husband and I are both good heights...
Thanks again for your replies. I looked up SBFT and I see what you mean that it could be a good option. I will ask my GI. We know some other children and adults with Crohn's in my community, so I...
And I am not 100% sure of the foot pain correlation. I will also post more on that once we meet with doctor again. I think it is because her extremity blood vessels are also inflamed....
Thank you for your thoughtful and sweet replies. I will keep you posted on what we discover....
Hi All- I posted some questions a couple weeks ago and you all were so kind to reply with helpful answers. My daughter had her colonoscopy and endoscopy today, and it looks like she has crohn's. We...
Hi Scifigal- I am a newbie here, my daughter was just diagnosed today.... She has been having foot pains for years now, and we didn't know why. The GI told us today it is probably crohn's related....
ezgoindude- Sorry about your journey through this. Have you gotten a second GI opinion? Also, does your university have a medical department? This is just the kind of mystery many people would want...
3rd quick post (you all asked a lot of good questions!). She has tested negative for lactose intolerance at the GI's with a breath test, she has been on miralax for 2 years to soften her stools. Hope...